# Hydrocephalus - Updated with: Our Birth Story on Page 14



## Sammy2009

We went for our 20+4 scan yesterday and all was fine except they said that the baby had Hydrocephalus, severely. I have already had all the tests for Downs, spina bifida, an amnio and tests for every other problem possible and bloods and all were fine. At 16 weeks the baby's brain was developing fine and nothing showed any signs of any problems. The sonographer said that the baby's brain tissue has been compressed with a lot of water and its not looking good. We have asked for a second opinion at another hospital but we already know the chances dont look good and have been told they will probably have to stop the pregnancy. Does this mean I will now have to gove birth to the baby on Monday? We are mortified... I dont know any answers or what to expect. I feel dead inside. I only know this is water on the brain... Is there nothing they can do? :cry:


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## EternalRose

Hi ya hun, :hugs:

I am so sorry to hear your news, all I know as well is that hydrocephalus is fluid on the brain. When is the other hospital going to give you the second opinion? Your in my thoughts hun, sorry I couldnt be more help x :hugs:

EternalRose xx


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## maybebaby3

i have seen a program where the baby had hydrocephalus and they drained the fluid from the brain bit by bit. i dont know what the long term effects on the baby were tho. sorry not 2 be more help. hopefully there is hope 4 your LO :hugs:


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## Sammy2009

Our second opinion is on Monday though i dont know what time yet. The team are the most professional in Holland so we know whatever they say will be final and accurate. They have just performed an operation a few months ago on a baby in the womb and now the baby is born and normal but what the long term effects are, they cannot predict. This is what i am worried about.... its a lottery. This of course depends on how bad it is... we wont know the prognosis until Monday. It may swing either way. All i know is the sonographer had problems finding any brain tissue so i guess ours is worst case as they have to have some healthy brain tissue to work with and i dont think she has any or much.


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## MrsSixx

I don't have any useful help/advice (sorry) but wanted to give you :hugs: and say I hope you get some good news on Monday.

xx


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## cupcake23

You poor thing...not much I can say but Im thinking of you.:hugs:


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## hannahR

So sorry lovey. xxx


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## amazed

I have no advice hun... but i just wanted to tell you that you and your baby our in my thoughts xxxx


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## AP

Sammy

My Alex had the same when she was born, as did a lot of the premature babies with Alex. Some of them had shunts put in to drain the fluid. Alexs fluid drained away eventually itself. 

In all those cases we just have to wait and see what the future holds for us, as it can have an effect, but not always. 

In the meantime she is a normal baby doing normal baby things. I really hope that the second opinion gives you better options and I am thinking of you xxxx


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## BBonBoard

so sorry


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## Nosy_Cow

I hope today goes ok! :hugs:

My daughter was diagnosed with spina bifida and hydrocephalus at 21 weeks. The hydrocephalus had put major pressure on her brain and we were told after an MRI scan that she was blind as well as major brain damage. 

She was born at 25 weeks by natural delivery. Things can be done but it was too late for our little one! 

They can fit a shunt but if the chlid ever had a tempurature they would have to be rushed into hospital in case the shunt is blocked. I don't want to scare you but it can be very serious! 

I hope everything is ok :hugs:


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## AP

Sammy , i hope today gives you some better news. We are here 4 u xxxx


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## WW1

I'm so sorry you're habing to go through this. I hope today brings some happier news. You're in my thoughts x


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## Sammy2009

I have just sat and typed out our whole appointment for the PC to crash before i edited it so if i post bit by bit you will understand....

We had our appointment today which told us not very much more than we were already knew last Friday. The brain is compressed with a lot of fluid and they do not know how much brain tissue is there. Basically its like a sponge so it could be a little and it could be a lot, they cant tell us. He "thinks" the ventricles are blocked but we dont know yet.

We asked on what scale we were for severity and basically there are 3 stages... 1 - Low to moderate. 2 - Moderate - severe, 3 - I guess, no hope! Stage 2 went to number 15, we are number 17! He said its moderate to severe top end of the scale, early stages of level 3 but not quite that bad.

We asked the babies head measurements and at the moment her head is not enlarged its the normal size it should be but if it grows anymore through the fluid (which he said he expected) then it will of course then be larger than average. The head at the moment is 19cms. 

The problem is the ventricles inside the brain. There are 4 and 3 of them are abnormaly enlarged very much. The fourth is normal at the moment. They measured the inside of the sections of the brain which were 1.5cm and anything under 1 cm is normal. They cannot drain off the excess fluid as this has only proven to worsten the situation apparently. They can only hope that in the next couple of weeks that the fluid starts to reduce or stop and then who knows what will happen. 

We asked what the chances of brain damage were and they said that there was a 70-80% chance she would suffer this although it would be impossible to say anything for definate, how bad or what part it would effect. We have until week 23.5 to terminate the pregnancy and if we havent after that time then we will be forced to continue. We have 2.5 weeks to see if the fluid reduces then we have to decide. There is a high chance it wont.

We are being booked in for an MRI this week as we have to get things moving as we have little time and also we will speak to an expert paedaetrician who has 20 years experience with this type of thing. It wont make our baby better though or fix the problem but at least we can speak to her and ask her how other people's experiences have worked out. We know the chances of keeping her now are really low. We hope the MRI will offer us an explanation to all this but it might not and like a said, it wont fix anything either.

I am also to have a blood test as sometimes the platelets in the mother can fight against something or other in the baby although this is rare and only about 2% chance.


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## Gizmo

I cant imagine being in your shoes right now and my sympathies are with you. Being informed as much as you can in the short time you have is very important... read as much as you can from qualified sources and listen to qualified people. There are pros and cons to every situation and you have a decision that no parent should ever have to face.... im so sorry. Most of all you and your OH stay strong for each other and you will come out of this even stronger though it wont feel like it at the time..... 

I am so hoping that the swelling subsides for all 3 of you.....


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## WW1

My heart goes out to you - as Gizmo says, no parent should ever have to face what you're going through.

:hugs: :hugs:


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## Sammy2009

Nosy_Cow said:


> I hope today goes ok! :hugs:
> 
> My daughter was diagnosed with spina bifida and hydrocephalus at 21 weeks. The hydrocephalus had put major pressure on her brain and we were told after an MRI scan that she was blind as well as major brain damage.
> 
> She was born at 25 weeks by natural delivery. Things can be done but it was too late for our little one!
> 
> They can fit a shunt but if the chlid ever had a tempurature they would have to be rushed into hospital in case the shunt is blocked. I don't want to scare you but it can be very serious!
> 
> I hope everything is ok :hugs:

Hi, thanks for your message and being honest... so sorry this has happened to you as well. Did you decide to let her go? :hugs:


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## Sammy2009

Nosy_Cow said:


> I hope today goes ok! :hugs:
> 
> My daughter was diagnosed with spina bifida and hydrocephalus at 21 weeks. The hydrocephalus had put major pressure on her brain and we were told after an MRI scan that she was blind as well as major brain damage.
> 
> She was born at 25 weeks by natural delivery. Things can be done but it was too late for our little one!
> 
> They can fit a shunt but if the chlid ever had a tempurature they would have to be rushed into hospital in case the shunt is blocked. I don't want to scare you but it can be very serious!
> 
> I hope everything is ok :hugs:

I have just read your story and im in tears... for many reasons, the sorrow you went through which i will probably have to go through too... the fear, the pain both mentally and physically and the lovely poems. Life is so damn cruel.


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## cupcake

I am so sorry to hear this my husband has/had to siblings with microsephally, i dont know if its the same thing because in their case their brains didnt actually develop and the head size was abnormal sadly his brother passed away at age 3. his sister who survived is about 30 years old, she is severely brain damaged and lives in a home, she functions on the level of a baby. I cant say what is the right thing to do, but i know that myMIL also had 3 other healthy children. she did not know the second child affected had the condition if she did i think she would have terminated not to go through it again. I pray that things are different for you.


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## Sammy2009

cupcake said:


> I am so sorry to hear this my husband has/had to siblings with microsephally, i dont know if its the same thing because in their case their brains didnt actually develop and the head size was abnormal sadly his brother passed away at age 3. his sister who survived is about 30 years old, she is severely brain damaged and lives in a home, she functions on the level of a baby. I cant say what is the right thing to do, but i know that myMIL also had 3 other healthy children. she did not know the second child affected had the condition if she did i think she would have terminated not to go through it again. I pray that things are different for you.

Our case is bad... one of the more unlucky ones. We are having an MRI this week but lets face it the doctors have said that we have 70/80% chance of brain damage. I know they can be wrong and often are but I dont know if we can take that chance with also knowing she has very little brain tissue as well and that is so compressed they can hardly find it. An MRI will tell us more soon but i have come to terms with the fact that its virtually all over. I could not cope with a LO with brain damage and OH couldnt either... My thoughts are all over the place and i keep skipping from one decision to the next. I am hoping the MRI will offer me some peace one way or another. Thanks for you message... I have to know the facts its good to read success stories and gives me hope but we have to be realistic and research from both angles. I would do anything to make her better... It will kill me to let her go. What a nightmare.


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## Nosy_Cow

Sammy2009 said:


> Nosy_Cow said:
> 
> 
> I hope today goes ok! :hugs:
> 
> My daughter was diagnosed with spina bifida and hydrocephalus at 21 weeks. The hydrocephalus had put major pressure on her brain and we were told after an MRI scan that she was blind as well as major brain damage.
> 
> She was born at 25 weeks by natural delivery. Things can be done but it was too late for our little one!
> 
> They can fit a shunt but if the chlid ever had a tempurature they would have to be rushed into hospital in case the shunt is blocked. I don't want to scare you but it can be very serious!
> 
> I hope everything is ok :hugs:
> 
> I have just read your story and im in tears... for many reasons, the sorrow you went through which i will probably have to go through too... the fear, the pain both mentally and physically and the lovely poems. Life is so damn cruel.Click to expand...

Hi honey,

We did decide to let her go. It wasn't just because of the hydrocephalus it was the spina bifida too! She was paralysed from the chest down which meant many other problems as well as the blindness and brain damage. It broke our heart making this decision.

As for the 2.5 weeks to decide. We were told we had to decide before the 22 weeks mark - at the time I was 20 weeks and 6 days! The appointments took so long to come through and eventually we decided at 24 weeks and 2 days. The only reason they are saying 23 weeks is because if the child is born alive after this time they have a duty to help them survive (it's 22 weeks in my hospital). If you did decide after the 23 week mark they would have to inject the baby's heart to stop it beating. It was one of the hardest things I had to do.

I hope I'm not upsetting you. The good thing is you have an MRI scan! Once you've been to that (get them to explain everything there and then - take notes too otherwise you'll forget) you'll know more. One thing I will warn you about it the little one doesn't like MRI machines! Little Chloe was going mad! You tend to stay in there for a while because the baby moves so much! I mean Chloe couldn't move her legs (she was having electric impulses - as they described them - going down her legs but she couldn't control this - bit like a twitch!) but she sure as hell was moving like crazy in there!

We had a paedaetrician as well as a 2 top consultants and a neuro surgeon looks through the MRI scan and do a more detailed scan (this was at Oxford). We didn't write down any notes and everything has blurred into one so I can't remember what was said about the ventricles only that they were abnormal!

Hope you are ok - if you need to chat PM me! :hugs:


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## Sammy2009

Nosy_Cow said:


> Sammy2009 said:
> 
> 
> 
> 
> 
> Nosy_Cow said:
> 
> 
> I hope today goes ok! :hugs:
> 
> My daughter was diagnosed with spina bifida and hydrocephalus at 21 weeks. The hydrocephalus had put major pressure on her brain and we were told after an MRI scan that she was blind as well as major brain damage.
> 
> She was born at 25 weeks by natural delivery. Things can be done but it was too late for our little one!
> 
> They can fit a shunt but if the chlid ever had a tempurature they would have to be rushed into hospital in case the shunt is blocked. I don't want to scare you but it can be very serious!
> 
> I hope everything is ok :hugs:
> 
> I have just read your story and im in tears... for many reasons, the sorrow you went through which i will probably have to go through too... the fear, the pain both mentally and physically and the lovely poems. Life is so damn cruel.Click to expand...
> 
> Hi honey,
> 
> We did decide to let her go. It wasn't just because of the hydrocephalus it was the spina bifida too! She was paralysed from the chest down which meant many other problems as well as the blindness and brain damage. It broke our heart making this decision.
> 
> As for the 2.5 weeks to decide. We were told we had to decide before the 22 weeks mark - at the time I was 20 weeks and 6 days! The appointments took so long to come through and eventually we decided at 24 weeks and 2 days. The only reason they are saying 23 weeks is because if the child is born alive after this time they have a duty to help them survive (it's 22 weeks in my hospital). If you did decide after the 23 week mark they would have to inject the baby's heart to stop it beating. It was one of the hardest things I had to do.
> 
> I hope I'm not upsetting you. The good thing is you have an MRI scan! Once you've been to that (get them to explain everything there and then - take notes too otherwise you'll forget) you'll know more. One thing I will warn you about it the little one doesn't like MRI machines! Little Chloe was going mad! You tend to stay in there for a while because the baby moves so much! I mean Chloe couldn't move her legs (she was having electric impulses - as they described them - going down her legs but she couldn't control this - bit like a twitch!) but she sure as hell was moving like crazy in there!
> 
> We had a paedaetrician as well as a 2 top consultants and a neuro surgeon looks through the MRI scan and do a more detailed scan (this was at Oxford). We didn't write down any notes and everything has blurred into one so I can't remember what was said about the ventricles only that they were abnormal!
> 
> Hope you are ok - if you need to chat PM me! :hugs:Click to expand...

Hi, thanks... yes ive heard they normally come hand in hand the Hydro and SB. They checked many times but she doesnt have that. If her Hydro was a little less severe we would stand more of a chance. They said they dont know how much brain tissue she has as it is compressed into a strip (the first sono said "not very much" but then he is not a doctor... maybe she hasnt though, how will they ever check this if it is so compressed by water?

Your not upsetting me anymore than I am already, i have to face facts, hard or not as this is the reality of things, take it or leave it, i have no choice. Yes it hurts to read these terribly unfortunate stories but whats better, knowing what could happen or living in la la land denying the facts? You know i cant believe I am here. While TTC i often read the Micarriage and Loss section. I lost a child very early once, maybe i was 5/6 weeks. I didnt know I was pregnant and i was not in the situation with the father where we could offer it a stable family life. I was not even sure at the time it was a miscarriage but it was. I really felt for all those people, all different situations but more so the people who had carried for so many weeks and given birth to still born children, people like you and me and others going through this. Its ironic because I had a thought many times that i was going to end up in that section, i dont know why. As time went by with the baby though and all the tests we had were great and we kept hearing the words "you have a perfect little baby in there, it looks lovely!" by every sonographer... my fears lessened and then disolved completely. but soon im going to be in that section, needing and asking for support...wondering, why me? Its just sods law isnt it? :cry::cry::cry:


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## EternalRose

Hi ya hun

No advice, I just wanted to let you know I am thinking of you and to give you some hugs :hugs:

EternalRose xx


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## Nosy_Cow

Hi honey,

I knew there was something wrong from about 12 weeks but the scans showed up nothing, the tests showed up nothing and the heartbeat was going strong so I tried to put it to the back of my mind! I knew I was going to loose her at 25 weeks and I did to the day! I know that probably sounds weird and plenty of people have asked how did you know? And I have no idea!

I usually stick to the Stillbirth, Neo-natal Loss and SIDS section but there's now an Ethical Prenatal Losses section too! If you do decide to terminate (and I know how hard that decision is) both sections are really helpful - and you can let all your emotions flow!! I'm just hoping so so much that you don't have to be in that group! :cry:

The hydro had completely crushed the seeing part of the brain and that's why they said she'd be blind but it was getting bigger as the weeks went on and the damage was getting gradually worse. I had my MRI at 22 weeks and a detailed scan at 24 weeks and the difference was obvious - it had got alot worse!

Sending you big :hugs: :hugs: :hugs: Hope you get the answers you need. Remember if you need me for anything (even stupid questions) PM me - I've been through this heartbreaking situation and apart from the SB it sounds pretty similar so I know the answers to the questions you will have and the pain you will feel inside.


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## Mommy2Kian

Thinking of you hun x


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## Sammy2009

Today we know nothing more... we called the hospital and the paedaetrician with all the experience is going to look over the scan pictures and notes tomorrow. We await the hospital to call for the MRI, it could be this week or next week, we dont know. They will take bloods depending on the results of the MRI, if there are clots showing they will do the test but this clotting problem only relates to 2 or 3% of people so there is not a high chance that this is the problem. A waiting game... in the worst degree. Today i kept myself busy. I cried at intervals... i am trying to carry on, there is nothing more i can do right now, we have an 11 year old daughter and xmas is round the corner and we have to continue with that for her sake.


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## Nosy_Cow

:hugs:


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## Tegans Mama

:hugs: I have also commented on your other thread and have run out of things to say to you - there is only so much one person can say :( Hope you come to a decision that is right for you


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## maybebaby3

u r in my thoughts and prayers :hugs:


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## Sammy2009

Tegans Mama said:


> :hugs: I have also commented on your other thread and have run out of things to say to you - there is only so much one person can say :( Hope you come to a decision that is right for you

Hi, thanks for all your help and advice... we just pray that the MRI will bring us some more positive results. The hospital called this morning and its on Monday at 3.45pm. In a way i am pleased its after Xmas although not so good that its on my birthday. I hope it wont be one of the darkest birthdays ever. But i dont care about birthdays... we will go out for something to eat maybe on Sunday and open my presents before we go to the hospital just for the sake of my daughter. The only present i want right now is for our little baby to have a chance but this present cant be bought sadly. We should have spoken-be speaking to paedaetrician by then. With the two results we will have to see what happens/make a decision at some point. There is not much more we can do right now.


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## maybebaby3

:hugs: so sorry u r in this terrible position xxx


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## Mommy2Kian

Just letting you no that you are in my thoughts hun, be strong xXx:hugs:


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## Sammy2009

I´d just like to say thanks to everyone that has offered and shown their support, its very much appreciated.

We have tried to have a normal Xmas for the sake of our other daughter, and yesterday was as normal as it could be due to the circumstances.

Two more days until the MRI and our decision will be a hard one. My friend called form Spain to say there was a couple there her friend knew whose baby had the same as ours has and they were told the baby would be brain damaged... they kept her anyway and she was fine! She had to have the fluid drained off but no brain damage... of course we are not lucky in taking chances so I dont know what will be the situation for us. I guess we just have to wait and see how good/bad things are on Monday.


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## AP

Best of luck honey xxx


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## dippy dee

Good luck hun i will keep you all in my thoughts xx


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## EternalRose

Will be thinking of you tomorrow hun xx


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## discoclare

Dear Sammy, 
My cousin had hydrocephalus at birth. He will be 39 years old tomorrow. In 1970 they didn't know as much about the condition as they do now and he was not diagnosed immediately after birth, obviously my aunt knew absolutely nothing about his condition until after his birth as there was no ultrasound then (in fact she didn't know anything about him at all as he is a twin and they thought she was only having one baby as they could only hear one heartbeat). He was in an out of hospital until about the age of 5 due to shunts having to be replaced, epilepsy (believed to be related to his hydrocephalus) etc. He now leads a fairly normal (and happy) indepentant life in a flat within a complex where he is self-contained and cooks and cleans for himself but there are helpers onsite for any problems and his bills are all included in the rent. All the residents have special needs. He has a full-time job as a kitchen porter in a department store. He likes golf, snooker and going to the pub. He does have a lot of problems with counting: if you asked him what 5 and 7 added up to he would take a guess rather than try and work it out and he also has problems reading and writing, though he can read sentences with short words and write his name, address etc. Subsequently he cannot live completely alone and needs a bit of help with things in life occassionally. 
There really is so much difference with hydrocephalus in the degree of brain damage done. I guess on the scale you mentioned my cousin would fall somewhere in the middle, not sure. Anyway hopefully you will have some more answers and information to help you tomorrow with your decision. Will be thinking of you,
Clare


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## Tegans Mama

More often than not, even with cases of severe hydrocephalus, any brain damage that's present isn't severely life altering. I know at least 20 people who have children with Hydro, and out of those I only know of one who is severely brain damaged. Its the same story in most cases - 'they told us our baby would be a vegetable and look at her now' type thing.


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## Sammy2009

Discoclare thanks so much for your story...

Tegans mama - I have heard just about everyone being told their baby will have "severe" brain damage... all the time I hear the same though that they havent had ANY or little.

We have to make the decision together though and Allan doesnt want to risk having a severely brain damaged child. I would like to take the risk but what if it all goes wrong? We both work and have to do so... To have a brain damaged child would mean I would have to stop work or go part time and then we could not afford to pay our mortgage, it would be a life changing thing for us in every way possible. Financially we could not do that. There is also the problem of the shunt... I have read many people are in and out of hospital with their children having infections, shunts failing. Our nearest hospital is miles away and I dont drive in Holland, Allan would have to leave work to come and collect us. His company are not compassionate in these types of things, its hard enough for him to take time to take us to the dentist! These are the things I worry about. Both working is hard enough in its own right and being a full time mum and having to do the usual chores around the house after working for 40 hours a week, I just cant see how we could take the risk on almost knowing our child would need special attention. OK, i know anything can happen at any time and you might HAVE TO change your life to suit the situation, to be there for your child but if we had the choice of taking such a huge risk, then what? We are going to do everything we can for our daughter if we are given that choice. Try to ask them to operate while she is inside me, try to buy some more time to see if things improve, see what the results are tomorrow, anything... everything. If we are told that there is little brain tissue and what she has is severely damaged though I think we are going to have to let our little girl go, not for us, for her and her quality of life. God its such an awful decision and I so hope they give us just a little hope or say things MIGHT be ok.... All we can do now is pray. :cry::cry:


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## Sammy2009

We had the scan yesterday, I was under the MRI for over an hour. The baby was going mental. Really mad. They say its because they don't have earplugs so i guess it hurts their ears and also the XRAY electric waves. I felt so sorry for her and it upset me to think of how uncomfortable she was having this done to her. She was booting the hell out of me... poor thing. My stomach hurt afterwards and she was unsettled. We know nothing more at this stage, we thought we would be called to a room and given the results after the scan but instead the doctor called Allan as we were about to leave the MRI room and said we now have an appointment tomorrow (Wednesday) at 11.00am to discuss the results. We left there deflated and disappointed, another 36 hours to wait... again! An experienced Neurologist (of 20 years) will be present as well to discuss these results. They have given us no indication one way or another as to what is happening. Allans parents are driving me mad!!! Last time we had an appointment they were continually calling us during the appointment to find out what was going on. Allan at first ignored it but they kept calling, then he answerphoned them and they kept calling back!! FFS, we can't even complete the appointment before they want to know the whole scenario! I appreciate they want to know whats going on but hell, so do we! Do they ever think there are a lot of people that want to know the answers right now including us? People at work, friends, relatives all want to know but we have asked them not to call us, we will contact them. We expected the results last night and therefore we knew we would be upset, needed some time together to speak about things, make decisions, console each other, discuss our daughters future... Have they no respect for our privacy at all? Even after Allan told them not to call us last night and that we would call them later that night they were on the bloody phone at 5.30pm (we had not even barely left the hospital and we were talking, crying.... i could have killed them! Allan sent them to answerphone and they continued to call so he answered it and told them to sod off in a nicer sort of way. Unbelieveable. I have told Allan not to tell them the results are Wednesday and to tell them the results are Friday so they stay off our backs. I was so mad i emailed his dad and told him there was nothing to report, to have some respect!!! I don't care whether they like it or lump it to be honest I have more important things to worry about than them. They never sodding listen! I called my mum (who thankfully did have the respect to wait until we called her) and told her there was nothing much to report and we would let her know at some point (as soon as we can) tomorrow.

So now its back to the waiting game... the pain on Allans face is awful, I feel so sorry for him. As a first time dad he should be able to enjoy the pregnancy, he should never have to experience this. I told him that she was kicking so strong last night I could feel her from the outside and he should really do so now too and take that opportunity while he still can. He said he didn't want to... I think he will do though although i'm worried it will upset him even more. I don't want him to have any regrets though as there is a chance he might not ever be able to feel her kick again soon. We are so sad.


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## WW1

:hugs:

I'll be thinking of you tomorrow x


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## Tegans Mama

Like I said on the other thread, it is a very good sign that she showed a reaction to the noise of the MRI. That means her brain is functioning at some level. Hopefully tomorrow they will tell you that her brain has shown signs that it is starting to 'fold'. My daughters brain was 'smooth' (none of the folds that characterise a normal functioning brain) until I was about 25 weeks along. Her brain was a little slow to develop - but it did, and although at first she had very little brain tissue because of the pressure, her brain developed regardless. 

Good luck for tomorrow.


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## jess_smurf

will be thinking of you x sort of understand the devastation you are going through 

all my love 

jess xxxx


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## FitzBaby

my heart is just breaking for you. you and allan are in my thoughts and prayers. i cannot imagine what you are going through but i am amazed at how strong you are. you are an inspiration and thank you for so generously sharing your story. much love and hugs to all three of you!


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## dippy dee

Aww sweetie i've just popped on to see how you all are and i am so sorry you are still waiting for results etc, my heart goes out to you and Allan and your dd. xx


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## Sammy2009

Tegans Mama said:


> Like I said on the other thread, it is a very good sign that she showed a reaction to the noise of the MRI. That means her brain is functioning at some level. Hopefully tomorrow they will tell you that her brain has shown signs that it is starting to 'fold'. My daughters brain was 'smooth' (none of the folds that characterise a normal functioning brain) until I was about 25 weeks along. Her brain was a little slow to develop - but it did, and although at first she had very little brain tissue because of the pressure, her brain developed regardless.
> 
> Good luck for tomorrow.

God when I read your posts it makes me so mad.... not because of you hun but because I think you tell us more than the hospital do and they are supposed to be our main source of support here! I explained to them once that I had spoken to a lady on a forum (when they were giving me all this "there is little hope" crap) and I told them that not every story ends up like a text book. They agreed but why isnt someone telling us that things MIGHT be ok??? Why have they written her off already almost? OK, i know im venting because im upset and they are probably waiting for the MRI results... they are probably looking at them as I type this... I just dont know what to think at the moment.

You know you said about the brain folding, please could you explain this more to me? I would like to know everything I can so I can ask them this tomorrow and then let you know and you can tell me what you think... it seems you are more informative than they are at the moment. It would have been nice if they could have told us things like this that they would be looking for!

:hugs::hugs::hugs:


----------



## Tegans Mama

Sammy2009 said:


> Tegans Mama said:
> 
> 
> Like I said on the other thread, it is a very good sign that she showed a reaction to the noise of the MRI. That means her brain is functioning at some level. Hopefully tomorrow they will tell you that her brain has shown signs that it is starting to 'fold'. My daughters brain was 'smooth' (none of the folds that characterise a normal functioning brain) until I was about 25 weeks along. Her brain was a little slow to develop - but it did, and although at first she had very little brain tissue because of the pressure, her brain developed regardless.
> 
> Good luck for tomorrow.
> 
> God when I read your posts it makes me so mad.... not because of you hun but because I think you tell us more than the hospital do and they are supposed to be our main source of support here! I explained to them once that I had spoken to a lady on a forum (when they were giving me all this "there is little hope" crap) and I told them that not every story ends up like a text book. They agreed but why isnt someone telling us that things MIGHT be ok??? Why have they written her off already almost? OK, i know im venting because im upset and they are probably waiting for the MRI results... they are probably looking at them as I type this... I just dont know what to think at the moment.
> 
> You know you said about the brain folding, please could you explain this more to me? I would like to know everything I can so I can ask them this tomorrow and then let you know and you can tell me what you think... it seems you are more informative than they are at the moment. It would have been nice if they could have told us things like this that they would be looking for!
> 
> :hugs::hugs::hugs:Click to expand...

Well, first of all, all brains which function correctly have folds like this - that is just a drawing, but I didn't think you'd appreciate me showing you a real life brain :winkwink: 
The brain of all fetus' have to develop those folds. Until I was quite far into my pregnancy, my baby didn't have those folds. That's the type of brain damage that Hydro normally causes, a lack of those folds. Because of the pressure the fluid in the ventricles causes, sometimes those folds are only able to develop to a certain extent. Sometimes they develop normally (most do) and sometimes they develop late, which is what Tegans did. They may tell you that your child has very little 'brain matter' - Tegan didn't have much, and they completely wrote her off like they have your LO. We were told she'd be a vegetable, she would have no quality of life, etc etc. 
Ask as many questions as you can - and demand answers. If they are flippant with you, and if you come away feeling like you don't know enough, I would really recommend getting a second opinion. 

One thing I will say though, is that if you do decide to continue with your pregnancy, you will have to fight for your child. I did - at every appointment, they offered me a termination. The last straw was when I was offered one at 32 weeks. You have to tell them to put it in your notes not to ask, or they do. 

And please, PLEASE don't let your husband make this decision for you. I promise you, that regardless of how much you love your husband, if you make the wrong decision, you will end up resenting him, and it could ruin your relationship. :hugs: :hugs:

Oh, and about the shunt ... Tegan has a shunt. She's had it since she was 8 weeks old, and whilst her first one DID go wrong, that was because she had an infection elsewhere. Most of the kids with hydro I know have had one shunt thats been there since birth. Tegan's 16 months old now and we've never had a problem with her shunt. And regarding temperature rises - for the first six months, yes you may be taken to hospital with a high temperature, but everything else will be eliminated first. If your child has a fever along with a runny nose, they won't think its the shunt. And after six months - the risk of infection is more of less 0.1%. It doesn't happen all that often. With a normal shunt blockage, the temperature does not rise :hugs:


----------



## EternalRose

Hi Sammy, 

I was going to say as well that it is a good sign she was reacting to the noise even though it was uncomfortable for her. I have my fingers crossed for Wed, that you get some good news. I said a little prayer last night for you :hugs: xx


----------



## Sammy2009

Tegans Mama said:


> Sammy2009 said:
> 
> 
> 
> 
> 
> Tegans Mama said:
> 
> 
> Like I said on the other thread, it is a very good sign that she showed a reaction to the noise of the MRI. That means her brain is functioning at some level. Hopefully tomorrow they will tell you that her brain has shown signs that it is starting to 'fold'. My daughters brain was 'smooth' (none of the folds that characterise a normal functioning brain) until I was about 25 weeks along. Her brain was a little slow to develop - but it did, and although at first she had very little brain tissue because of the pressure, her brain developed regardless.
> 
> Good luck for tomorrow.
> 
> God when I read your posts it makes me so mad.... not because of you hun but because I think you tell us more than the hospital do and they are supposed to be our main source of support here! I explained to them once that I had spoken to a lady on a forum (when they were giving me all this "there is little hope" crap) and I told them that not every story ends up like a text book. They agreed but why isnt someone telling us that things MIGHT be ok??? Why have they written her off already almost? OK, i know im venting because im upset and they are probably waiting for the MRI results... they are probably looking at them as I type this... I just dont know what to think at the moment.
> 
> You know you said about the brain folding, please could you explain this more to me? I would like to know everything I can so I can ask them this tomorrow and then let you know and you can tell me what you think... it seems you are more informative than they are at the moment. It would have been nice if they could have told us things like this that they would be looking for!
> 
> :hugs::hugs::hugs:Click to expand...
> 
> Well, first of all, all brains which function correctly have folds like this - that is just a drawing, but I didn't think you'd appreciate me showing you a real life brain :winkwink:
> The brain of all fetus' have to develop those folds. Until I was quite far into my pregnancy, my baby didn't have those folds. That's the type of brain damage that Hydro normally causes, a lack of those folds. Because of the pressure the fluid in the ventricles causes, sometimes those folds are only able to develop to a certain extent. Sometimes they develop normally (most do) and sometimes they develop late, which is what Tegans did. They may tell you that your child has very little 'brain matter' - Tegan didn't have much, and they completely wrote her off like they have your LO. We were told she'd be a vegetable, she would have no quality of life, etc etc.
> Ask as many questions as you can - and demand answers. If they are flippant with you, and if you come away feeling like you don't know enough, I would really recommend getting a second opinion.
> 
> One thing I will say though, is that if you do decide to continue with your pregnancy, you will have to fight for your child. I did - at every appointment, they offered me a termination. The last straw was when I was offered one at 32 weeks. You have to tell them to put it in your notes not to ask, or they do.
> 
> And please, PLEASE don't let your husband make this decision for you. I promise you, that regardless of how much you love your husband, if you make the wrong decision, you will end up resenting him, and it could ruin your relationship. :hugs: :hugs:
> 
> Oh, and about the shunt ... Tegan has a shunt. She's had it since she was 8 weeks old, and whilst her first one DID go wrong, that was because she had an infection elsewhere. Most of the kids with hydro I know have had one shunt thats been there since birth. Tegan's 16 months old now and we've never had a problem with her shunt. And regarding temperature rises - for the first six months, yes you may be taken to hospital with a high temperature, but everything else will be eliminated first. If your child has a fever along with a runny nose, they won't think its the shunt. And after six months - the risk of infection is more of less 0.1%. It doesn't happen all that often. With a normal shunt blockage, the temperature does not rise :hugs:Click to expand...

I have replied to the other thread.... no, ive told him we have to make this decision together... I think we can do that, its the decision itself that will the hardest. I guess we just have to see the results but all you information has given us some comfort, strength and hope (even if we are feeling less than positive right now, we are trying to hold on to a little hope) Allan asked tonight if you can see the shunt, I told him where it was placed and the hair normally grows over it. I dont want to push the idea onto him as i know by past experience he has to accept situations at his own pace. I have explained the good and bad about the shunt, sometimes there are problems and sometimes there arent. He knows he can ask me at anytime and I will explain. The doctors will also be able to do this tomorrow, he seems to listen to them more than my instincts which worries me sometimes as I have told him they dont know everything and they are not always RIGHT! Thats why I ask him to read what people write on here... to read real life examples of these situations... to see what people have been told and its not been all doom and gloom. I think if a doctor told us that our child would be brain damaged severely and we took the chance and she wasnt there is a small chance that particular doctor would not live to see his next patient to be honest. Allan has already said if the first sonographer is wrong he is going to go back there and kill him :dohh: Of course, this never happened because the baby's condition was confirmed. I would have been over the moon if he was wrong, i would have just been happy that everything was going to be ok :cry:


----------



## maybebaby3

my heart goes out to you. i hope you get some good news tomorrow :hugs:


----------



## Tegans Mama

At 16 months old, Tegan's shunt is invisible to anyone who doesn't know its there. Of course you can feel it, but no, you can't see it. 

Doctors more definitely aren't always right. They have been wrong at every step for Tegan.


----------



## Sammy2009

EternalRose said:


> Hi Sammy,
> 
> I was going to say as well that it is a good sign she was reacting to the noise even though it was uncomfortable for her. I have my fingers crossed for Wed, that you get some good news. I said a little prayer last night for you :hugs: xx

Your so kind... you all are. We dont know what we would have done without your support and well wishes AND prayers. The little bit of faith I have in God will be used tonight to pray for our daughter tonight..., pray for some miracle or just some hope would be a start right now. Nerves are fraying and we are arguing about the results we dont even know yet. I guess its the pressure of tomorrow. We are trying to stay strong but jesus you know I would not wish this upon my worst enemy. I dont react well or strong in these situations, i screamed and sobbed when I was told my dad had died unexpectedly in October... the rest of the people in the office had to leave the room as it was too distressing for them to watch my pain. I dont want to crack like that again... but this will be worse if they say we have to lose her. I am so scared. I dont know what to do. I dont know how I will even get there being in the car for 1 hour.... every hour is a hurdle right now. God its so painful.


----------



## Emma1980

my friend had this and was advised to abort the pregnancy - she refused and her bouncing baby boy is perfect! not a sign that there was any issues in pregnancy at all...

I wish you all the best hun xx


----------



## FitzBaby

thinking and praying very hard for you tonight. the best of luck tomorrow. much love sending your way to you, your oh and your bubs...


----------



## Sammy2009

Emma1980 said:


> my friend had this and was advised to abort the pregnancy - she refused and her bouncing baby boy is perfect! not a sign that there was any issues in pregnancy at all...
> 
> I wish you all the best hun xx

Thanks for telling us that... I am going to let Allan read this in a minute. Your comments are a big help to us 

:hugs:


----------



## Tegans Mama

Sammy... you have so much hope. I can sense it. You want this baby so badly :hugs: Its such a horrible thing to go through, I wouldn't wish it on anyone :hugs: :hugs:


----------



## Sammy2009

FitzBaby said:


> thinking and praying very hard for you tonight. the best of luck tomorrow. much love sending your way to you, your oh and your bubs...

Thanks hun, I just feel sick with worry....Ill be glad when tomorrow is over.:hugs:


----------



## Sammy2009

Well this is todays update...

We left this morning for the hospital... there were no words in the car, we were too wrapped in our own thoughts I think, trying to cover our reactions for every possible scenario. I managed to keep myself together though I felt like I was going to pass out with all the worry.

We arrived on time and we were seated in a small room waiting for the experts at 11am. At 11.10am they turned up. There was 3 of them, one was a Neurologist, one was a level lower than that (I guessed he was only there for experience as he never really participated in the discussion) and then another lady who had discussed our results with the neurologist.

They started the conversation with: "First of all we woulld just like to say that before we start explaining the results, you are not obliged to make any decisions today" My first thought was "well that means its going to be bad news then!"

Then they started to explain what was happening.... she drew a picture of the brain and said there was a small tube in the middle of the brain, the good news its not blocked, its too narrow. It is releasing fluid but not enough and therefore there is a build up of excess fluid putting pressure on her brain and therefore the ventricles are enlarged. There are no signs of bleeding or any other things out of the ordinary happening which is also good news.

After the MRI they discussed the results and "at the moment" there is no brain damage, the brain tissue is normal, there is the correct amount and if things stay the same they are not expecting anything (brain, motor skills) to be affected and said there is no reason that we shouldn't have a healthy baby. The baby's head is not enlarged at the moment, its in the normal range but top end of the scale so the slightest increase could take it over the abnormality stage but on the whole things are looking good on that front. Of course its not quite as simple as that and so;

The chances are this:

There is a 60% per cent chance that things will stay the same and if this happens then the baby will not experience any brain damage (although there are no direct guarantees, they do not foresee any problems after close monitoring) However, after the birth they will obviously have to drain the excess fluid and this can be done in two ways:

1. A shunt can be fitted above the ear, underneath the skin where the hair will grow over and will drain directly to her bladder and she may need this for life. There is a 3-5% chance of complications and infection with this procedure and can sometimes fail and need repeating. This is normally performed a few weeks after birth.

2. There is a new procedure just been brought out which is where after birth they can laser a small hole in the faulty (narrow) valve in her brain and therefore this would drain all the fluid as it should, she will not have to have a shunt fitted as this will solve her problem. The risks are: There is only a 50% chance of success in babies of 6 months or less. There is a chance it could cause bleeding to the brain although this is not all that common. There is a chance the operation won't work and in this case they will fit the shunt instead at the same time to save the baby having to have two operations. At a later date there is a chance they could repeat the operation of the laser to try again but they consider this as not very nice for the infant if a perfectly working drain is already in place. Its not ruled out though and it is possible to try again at a later date if the first time is unsuccessful.

There is a 20% chance that the fluid will increase and if this happens then its not good. We will be over the 24 week mark for ending the pregnancy at this stage so we would have to look at options of maybe draining the brain while she is unborn (results are normally fatal sadly) or bringing her out at around the 34 week mark. If things got a lot worse and she would be severely brain damager we would not want her to live her life like this and would have to approach another country to end the pregnancy as Holland will not let us go past 24 weeks. We have discussed all the options on this as we are not (and hope never to be) facing that problem right now.

There is a 20% chance that the value might widen and grow and that the fluid might drain off completely and if this happens all will be normal and nothing affected and she will be as a normal as any other baby could be with no further treatment required. This doesn't happen very often and the neurologist said that she maybe only sees this happen 2 or 3 times a year in that hospital, there is roughly a 2:10 chance.

I asked about whether the brain folds had formed yet and she said it was too early for this at 22 weeks, in any baby they would not be formed at this stage so its something they will monitor for the future. They also told me that they checked for another thing, I cannot remember the technical name, its not normally present in females and she is clear of that. They also checked for something else that Hydro can cause which is where the pigmentation is affected and blobs of coffee like spots appear throughout the body (this is not health affecting) but she doesn't have any signs of that at the moment (and hope she never will have either though this is not serious at all)

So, for now, they want to scan me in a week and see whats happening... if the head has grown, fluid levels, change. After that they will scan me every 2-3 weeks depending on the results each time. We have another scan on Tuesday 5th January @ 9:00am. We were asked if we wanted to have these scans at our midwife place or continue with the professional hospital in Leiden but since the midwives cannot even book us a successful appointment we decided there was no need for discussion and that we wanted to stay with the team of experts where they have the best equipment and professional people. We trust and feel safer with that hospital.

There is nothing more we can do at the moment but pray and hope and try to keep some faith. For the first time in as long as I can remember we can breath a small sigh of relief and hope things improve over the weeks.

Personally, I am really mad with the first sonographer we had in Capelle who first picked up this problem 2 weeks ago. When I asked what would happen to my baby he told us "They will probably end the pregnancy to be honest" I feel this was unprofessional and insensitive and if her wasn't experienced to have "known" the options he should have never sent us through the hell we have just been through thinking there was no hope! But we have to keep our strength for the coming weeks and hope for the best really.

What do you think? :hugs:


----------



## Tegans Mama

:hugs:

They said exactly what I thought they would. The EXACT same thing they told us about Tegan. EXACT. 

:hugs: :hugs: :hugs: I really hope the outcome helps you make your decision. It is NOT!!! all doom and gloom, like I said. I am so sorry they were wrong at the first scan - and I hope you are happy that the odds of your baby being healthy are higher than the odds against it. I am so sorry that I'm not speaking coherently here - I am very happy for you, BUT I absolutely friggin hate the way they treat people who find out their child has hydro before they find out how serious it is. :hugs:


----------



## Tegans Mama

They offered to do a third ventriculostomy for Tegan (the hole) but we refused, as it has a VERY low success rate in under 6 year olds. The brain heals. The best bet at such a young age is always a shunt, unless the CSF (cerebro spinal fluid that causes hydrocephalus) is infected, then they will do an EVD (external ventricular drain) where the fluid drains into a bag outside the body. 

Honestly, I am so, so SO happy for you. That is good news. The verdict you got is probably the best that you could have. We had a 90% chance for brain damage with Tegan. You have a 40% chance with your LO. In my eyes, that is fantastic.


----------



## Blah11

Glad you got no bad news :hugs:

In regards to the first sonographer I hope you complain about how insensitive he was when telling you the news. It sounds as if he was out of his league knowledge wise anyway and really shouldn't have advised you on what medical approach they would 'probably' take.


----------



## AP

I cannot tell you just how many babies I saw get shunts in neonatal. We were close to getting one but Alex's fluid went away itself. Her wee friend got loads of shunts and may need a permanent one,but he is fine!

:hugs: I read the results feeling nervous as to what you were going to say - looks like there is great hope. Tegans mama is a total gem. I'd be inclined to go with her.


----------



## Sammy2009

Tegans Mama said:


> :hugs:
> 
> They said exactly what I thought they would. The EXACT same thing they told us about Tegan. EXACT.
> 
> :hugs: :hugs: :hugs: I really hope the outcome helps you make your decision. It is NOT!!! all doom and gloom, like I said. I am so sorry they were wrong at the first scan - and I hope you are happy that the odds of your baby being healthy are higher than the odds against it. I am so sorry that I'm not speaking coherently here - I am very happy for you, BUT I absolutely friggin hate the way they treat people who find out their child has hydro before they find out how serious it is. :hugs:

Hun,

Thanks, i feel like I could punch that first sonographer... i was in tears when i asked him what will happen to our baby??? To answer with such a negative answer giving us little hope at all has brought us nothing but additional heartache, loss of hope and worry. If he would have said "I am not experienced enough to know what the severity is, please consult your hospital for further tests" I would have understood and held out more hope. He made us think that they were going to kill our baby, etc etc. I am furious. All in all the consultants were really nice (apart from one that was nice but non functional!!) Allan asked the Neurologist if she was in our position would she make the same decision as us and continue with the pregnancy? She said "Yes, she would". We have to give her every chance we can, she deserves that... she deserves everything good to happen to her now. I prayed last night for her, we all did. I am not really religious but when you are faced with this terrible problem you have to try everything you can. For it all to drain off would be a miracle for us but for it not to progress would be fantastic news for us as well.... I just pray id doesnt get worse, surely none of us deserve that after all this? Come on baby, put all your strength into growing that value just a little bit wider!!! :hugs:

I would like to thank everyone for their lovely words and support over the last couple of weeks and hope we can all stay in touch over the coming weeks since we are not out of the woods YET! :dohh:


----------



## Tegans Mama

Even if her hydro stays the same - they won't be the same numbers next time. As her head grows, the fluid may 'grow' with it. I.e it will seem like its getting worse, when in actual fact its staying the same. 
You should have all the hope in the world. If your daughters condition is the same next time as it is now, you should be proud, and you should be happy and you should scream and cry and laugh and you will probably experience more emotions than you ever have before in your entire life. And that feeling you get - it won't go away. You'll spend your life being proud.
We were told Tegan would be delivered at 34 weeks. Her hydro got worse, but not bad enough to warrant an early delivery. She was born at 40 weeks exactly :)
Your baby does deserve every chance she can get. So, here's to your baby and her health. :hugs:


----------



## bigbloomerz

Hey hun only just noticed this thread, we were also told our baby has fluid on the brain at our 23 weeks scan, and have since been for a few others to check on it, we havent been given any information as to what this can mean and have only found out things from looking online and ive also messaged Tegans Mama a Few times, she is a gem! :) Its always nice to know other people have gone through the same thing as you and that you are not alone.
If you need someone to talk to then feel free to send me a message :)

We have another scan next week to check on the growth of the fluid, I will be 32 weeks, we arent really looking forward to it, but we hope they will maybe explain a few more things to us this time rather than just leave us hanging! 

Wishing you all the luck in the world xx


----------



## stephwiggy

I am so glad for you not getting "worst case news" 

Tegans Mama is a lovely lady and has been thru such a similar situation and has a wonderfull and beautifull iccle girl to show, i so hope things stay the way they are going and or improve for you. 


Huge hugs and all the best


----------



## Sammy2009

sb22 said:


> I cannot tell you just how many babies I saw get shunts in neonatal. We were close to getting one but Alex's fluid went away itself. Her wee friend got loads of shunts and may need a permanent one,but he is fine!
> 
> :hugs: I read the results feeling nervous as to what you were going to say - looks like there is great hope. Tegans mama is a total gem. I'd be inclined to go with her.

She has she has been great!!! Everyone has but its good to be able to speak to people about their cases... sadly not all have such a happy ending but it was important and still is not to just hear the success stories as it helps us to keep grounded. When i found out she had the condition I could not find anything or anybody on the forum who seemed to have posted about this but I was soon put in touch with Tegans mum by one of the mods which was really nice of her. Its been a frantic two weeks and I know we have a lot of worry to come but all I wanted was some hope and we got that so we have to be thankful for small mercies at the moment :hugs:


----------



## Sammy2009

bigbloomerz said:


> Hey hun only just noticed this thread, we were also told our baby has fluid on the brain at our 23 weeks scan, and have since been for a few others to check on it, we havent been given any information as to what this can mean and have only found out things from looking online and ive also messaged Tegans Mama a Few times, she is a gem! :) Its always nice to know other people have gone through the same thing as you and that you are not alone.
> If you need someone to talk to then feel free to send me a message :)
> 
> We have another scan next week to check on the growth of the fluid, I will be 32 weeks, we arent really looking forward to it, but we hope they will maybe explain a few more things to us this time rather than just leave us hanging!
> 
> Wishing you all the luck in the world xx

Hi,

Thanks for your message.... so at 23 weeks you were told your baby had this condition? Have they told you anything further in the scans since? Has it reduced or stayed the same or don't you know yet? I am dreading even the scan next week, I will indeed dread every scan from now on but what can you do? You just have to go with it and keep trying to jump the hurdles. I will be very grey at the end of this pregnancy believe me! :wacko::hugs:

Wishing you all the best of luck for the scan next week xxx


----------



## EternalRose

I am so glad the results you got were not all doom and gloom, and they said there is no brain damage. My heart skipped a bit when I read that, you must feel relieved for that part and I agree with everyone else that sonagrapher was so insensitive to say something like that!!! :growlmad: I will continue to say a little prayer each night for you hun :hugs: xx


----------



## Sammy2009

Tegans Mama said:


> They offered to do a third ventriculostomy for Tegan (the hole) but we refused, as it has a VERY low success rate in under 6 year olds. The brain heals. The best bet at such a young age is always a shunt, unless the CSF (cerebro spinal fluid that causes hydrocephalus) is infected, then they will do an EVD (external ventricular drain) where the fluid drains into a bag outside the body.
> 
> Honestly, I am so, so SO happy for you. That is good news. The verdict you got is probably the best that you could have. We had a 90% chance for brain damage with Tegan. You have a 40% chance with your LO. In my eyes, that is fantastic.

Thanks so much... well really we were given an 80% chance of things being ok as there is 60% chance things will stay the same, 20% chance things will improve (80% good news) and of course the dreaded 20% chance things will be get worse! We are hoping that even by the time of the birth (praying we get that far!) that they might have advanced this laser procedure even more by May. The odds at this particular hospital at the moment are 50/50 in babies under 6 months old. I dont know the odds for children over 6 months old but if things stay the same then they will have to drain asap, we know we cannot wait until she is 6 months old. They are pretty confident with it saying yes there are risks of bleeding but they are able to fit a shunt if this procedure fails. I guess we will have to see what the sitaution is after the birth, I think they will scan and check for infections and see what the score is? In an ideal world the fluid would all drain off and make her life easier but there is only a small chance this will happen so we are not expecting this. Thats the odds at the moment and they cannot say any more than that right now.

Did Tegans fluid get worse or stay constant or drain off somewhat? Did they ever say what was causing it, a blockage or a narrow valve? :hugs:


----------



## Sammy2009

EternalRose said:


> I am so glad the results you got were not all doom and gloom, and they said there is no brain damage. My heart skipped a bit when I read that, you must feel relieved for that part and I agree with everyone else that sonagrapher was so insensitive to say something like that!!! :growlmad: I will continue to say a little prayer each night for you hun :hugs: xx

Thanks so much, god i choked when they told me, i thought i was going to be sick! We were expecting the worse... you don't want to know what was going on in my head on the way over there. Maybe in a way (and maybe not for my sanity) it was best to prepare ourselves for the worst and then anything else is a bonus. We really thought after what the first sonographer said it was all over anyway. Thank you for praying for her... thats very kind of you xxx:hugs:


----------



## Tegans Mama

Tegans Hydro is caused by her spina bifida -her spinal cord isn't the same as yours or mine, it is 'broken' so to speak so the fluid doesn't drain properly that way (thats the normal route). She also has Chiari Malformation - so the hole at the base of her skull where the fluid actually drains through on the way to the spinal column is blocked too. The valve inbetween her ventricles in blocked due to damage that occurred when she 2 weeks old when she had a staph infection in her ventricles. 

However, we are lucky because her Hydro isn't that bad. She went a week without a shunt before she started showing signs that she needed one, which is quite uncommon.

Her fluid got steadily worse, and at 38 weeks they said it was so bad that she wouldn't even breathe on her own, and I was scheduled to be induced at 39 weeks. They refused my request for a section, saying she would die when she was born anyway, so I might aswell have her vaginally so I could start TTC straight away :cry: However, she was born, (via emergency section) at 40 weeks after a failed induction that lasted a week, and didn't need a shunt until she was a week old. So, obviously, the doctors were wrong. Her first shunt got infected because a small part of the wound on her back after her closure op got infected. She had another in 6 weeks later (had an EVD for six weeks) which is still in now, and is working great :)


----------



## Sammy2009

Tegans Mama said:


> Even if her hydro stays the same - they won't be the same numbers next time. As her head grows, the fluid may 'grow' with it. I.e it will seem like its getting worse, when in actual fact its staying the same.
> You should have all the hope in the world. If your daughters condition is the same next time as it is now, you should be proud, and you should be happy and you should scream and cry and laugh and you will probably experience more emotions than you ever have before in your entire life. And that feeling you get - it won't go away. You'll spend your life being proud.
> We were told Tegan would be delivered at 34 weeks. Her hydro got worse, but not bad enough to warrant an early delivery. She was born at 40 weeks exactly :)
> Your baby does deserve every chance she can get. So, here's to your baby and her health. :hugs:

You were right when you said babies can be little miracles, for Tegan to go through all that and end up as brilliant as she did it just amazing. She defied all doctors thoughts bless her.... :kiss:

I forgot to say... they also checked for another condition that Hydro causes, I cannot remember the medical term for it... it was a long name... anyway, its not normally present with females and in our case it was not showing. There was also something else which it causes and thats brown like blobs on the skin, its not health threatening just a pigmentation defect and its visual but causes no other effects... well she is not showing any signs of that either at the moment. Did you get told about these things? Its seems finally at last we seem to be able to trust these team of experts as they have checked for everything entirely possible at the moment. :hugs:


----------



## Tegans Mama

Honestly hun, Tegan has a LOT of things wrong with her, she has no problems with her skin (bar eczema) and everything that is wrong with her is caused by one thing, which is her spina bifida. She has been checked for all sorts of things, but at the moment we are stable and nothing new has popped up for a few months


----------



## Sammy2009

Tegans Mama said:


> Tegans Hydro is caused by her spina bifida -her spinal cord isn't the same as yours or mine, it is 'broken' so to speak so the fluid doesn't drain properly that way (thats the normal route). She also has Chiari Malformation - so the hole at the base of her skull where the fluid actually drains through on the way to the spinal column is blocked too. The valve inbetween her ventricles in blocked due to damage that occurred when she 2 weeks old when she had a staph infection in her ventricles.
> 
> However, we are lucky because her Hydro isn't that bad. She went a week without a shunt before she started showing signs that she needed one, which is quite uncommon.
> 
> Her fluid got steadily worse, and at 38 weeks they said it was so bad that she wouldn't even breathe on her own, and I was scheduled to be induced at 39 weeks. They refused my request for a section, saying she would die when she was born anyway, so I might aswell have her vaginally so I could start TTC straight away :cry: However, she was born, (via emergency section) at 40 weeks after a failed induction that lasted a week, and didn't need a shunt until she was a week old. So, obviously, the doctors were wrong. Her first shunt got infected because a small part of the wound on her back after her closure op got infected. She had another in 6 weeks later (had an EVD for six weeks) which is still in now, and is working great :)

OMG you have really gone through it havent you? You are so brave! :hugs: We were told today that if the head enlarges we may probably have to have a C-Section as well. I don't care to be honest about me as long as she is ok... natural, C-Section, i don't care! Its just amazing what Tegan has gone through, you ought to be very proud of her, which i know you are but also of yourself for giving her that chance against all odds. I cannot believe the things they said to you!!!! :growlmad: "so you can start to TTC again straight away..." My god how dare they say something like that? Refuse a C-Section. I just dont believe them sometimes, i can imagine you were devastated! You both deserve a medal! :hugs:


----------



## Tegans Mama

Sammy2009 said:


> Tegans Mama said:
> 
> 
> Tegans Hydro is caused by her spina bifida -her spinal cord isn't the same as yours or mine, it is 'broken' so to speak so the fluid doesn't drain properly that way (thats the normal route). She also has Chiari Malformation - so the hole at the base of her skull where the fluid actually drains through on the way to the spinal column is blocked too. The valve inbetween her ventricles in blocked due to damage that occurred when she 2 weeks old when she had a staph infection in her ventricles.
> 
> However, we are lucky because her Hydro isn't that bad. She went a week without a shunt before she started showing signs that she needed one, which is quite uncommon.
> 
> Her fluid got steadily worse, and at 38 weeks they said it was so bad that she wouldn't even breathe on her own, and I was scheduled to be induced at 39 weeks. They refused my request for a section, saying she would die when she was born anyway, so I might aswell have her vaginally so I could start TTC straight away :cry: However, she was born, (via emergency section) at 40 weeks after a failed induction that lasted a week, and didn't need a shunt until she was a week old. So, obviously, the doctors were wrong. Her first shunt got infected because a small part of the wound on her back after her closure op got infected. She had another in 6 weeks later (had an EVD for six weeks) which is still in now, and is working great :)
> 
> OMG you have really gone through it havent you? You are so brave! :hugs: We were told today that if the head enlarges we may probably have to have a C-Section as well. I don't care to be honest about me as long as she is ok... natural, C-Section, i don't care! Its just amazing what Tegan has gone through, you ought to be very proud of her, which i know you are but also of yourself for giving her that chance against all odds. I cannot believe the things they said to you!!!! :growlmad: "so you can start to TTC again straight away..." My god how dare they say something like that? Refuse a C-Section. I just dont believe them sometimes, i can imagine you were devastated! You both deserve a medal! :hugs:Click to expand...

Oh yes, 2008 was a very tumultuous year for us. We went through so much. But, we are all happy now and is everything is going fine. It was hard, so hard, I was absolutely terrified of Tegan being born because of what that doctor said (that she'd die straight away) and I thought if I kept her in my stomach forever it would be better :cry: Doctors can be SO heartless, but their attitude changes once the child is born. One doctor who didn't even know whether Tegan was a girl or a boy, kept calling her a 'he' (before she was born) and said.. 'if I were you, I would terminate this child, you would have to be a super parent to even cope with the care he will need in a day'. ... Now I know that looking after her CAN be hard, but its not TOO hard, and I am by no means a super parent, but Tegan is happy and healthy, and she gets everything she needs. It does take two of us to look after her but that is because of her SB, not because of her hydro.


----------



## Sammy2009

Tegans Mama said:


> Sammy2009 said:
> 
> 
> 
> 
> 
> Tegans Mama said:
> 
> 
> Tegans Hydro is caused by her spina bifida -her spinal cord isn't the same as yours or mine, it is 'broken' so to speak so the fluid doesn't drain properly that way (thats the normal route). She also has Chiari Malformation - so the hole at the base of her skull where the fluid actually drains through on the way to the spinal column is blocked too. The valve inbetween her ventricles in blocked due to damage that occurred when she 2 weeks old when she had a staph infection in her ventricles.
> 
> However, we are lucky because her Hydro isn't that bad. She went a week without a shunt before she started showing signs that she needed one, which is quite uncommon.
> 
> Her fluid got steadily worse, and at 38 weeks they said it was so bad that she wouldn't even breathe on her own, and I was scheduled to be induced at 39 weeks. They refused my request for a section, saying she would die when she was born anyway, so I might aswell have her vaginally so I could start TTC straight away :cry: However, she was born, (via emergency section) at 40 weeks after a failed induction that lasted a week, and didn't need a shunt until she was a week old. So, obviously, the doctors were wrong. Her first shunt got infected because a small part of the wound on her back after her closure op got infected. She had another in 6 weeks later (had an EVD for six weeks) which is still in now, and is working great :)
> 
> OMG you have really gone through it havent you? You are so brave! :hugs: We were told today that if the head enlarges we may probably have to have a C-Section as well. I don't care to be honest about me as long as she is ok... natural, C-Section, i don't care! Its just amazing what Tegan has gone through, you ought to be very proud of her, which i know you are but also of yourself for giving her that chance against all odds. I cannot believe the things they said to you!!!! :growlmad: "so you can start to TTC again straight away..." My god how dare they say something like that? Refuse a C-Section. I just dont believe them sometimes, i can imagine you were devastated! You both deserve a medal! :hugs:Click to expand...
> 
> Oh yes, 2008 was a very tumultuous year for us. We went through so much. But, we are all happy now and is everything is going fine. It was hard, so hard, I was absolutely terrified of Tegan being born because of what that doctor said (that she'd die straight away) and I thought if I kept her in my stomach forever it would be better :cry: Doctors can be SO heartless, but their attitude changes once the child is born. One doctor who didn't even know whether Tegan was a girl or a boy, kept calling her a 'he' (before she was born) and said.. 'if I were you, I would terminate this child, you would have to be a super parent to even cope with the care he will need in a day'. ... Now I know that looking after her CAN be hard, but its not TOO hard, and I am by no means a super parent, but Tegan is happy and healthy, and she gets everything she needs. It does take two of us to look after her but that is because of her SB, not because of her hydro.Click to expand...

I think you are a SUPER parent and I think many would agree with me on here!!! :hugs::hugs::hugs:

Not only for the fact that you gave her a chance against all odds, knowing the huge risks (and I don't think i would have been strong enough to do that to be honest) but also because of all the things you have been through, got through and kept positive for. For everything you do for her on a daily basis and your patience with her... its truly remarkable that for now (and hopefully forever!) we only have one of those things to contend with and it makes us look pretty weak when I read everything you have had to deal with in the last year and a half!!! Its amazing... I cannot believe little Tegan has been through so much and her smiling little face on the pictures just show how happy she is and how strong she has been. Shes a miracle, really. :hugs:


----------



## Tegans Mama

Sammy2009 said:


> I think you are a SUPER parent and I think many would agree with me on here!!! :hugs::hugs::hugs:
> 
> Not only for the fact that you gave her a chance against all odds, knowing the huge risks (and I don't think i would have been strong enough to do that to be honest) but also because of all the things you have been through, got through and kept positive for. For everything you do for her on a daily basis and your patience with her... its truly remarkable that for now (and hopefully forever!) we only have one of those things to contend with and it makes us look pretty weak when I read everything you have had to deal with in the last year and a half!!! Its amazing... I cannot believe little Tegan has been through so much and her smiling little face on the pictures just show how happy she is and how strong she has been. Shes a miracle, really. :hugs:

:hugs: Thankyou so much :) I know that we have been through a lot, but honestly while it was all happening it was a blur... I didn't realise until after just how much had happened. The way we live our lives is normal to us now, and to outsiders it does look like we do a lot (Tegan has to be catherterised twice a day, she has medication four times a day, then there is physio, a wheelchair when she's older, and she can't use her legs at all so she army crawls everywhere and has to be carried a lot of the time) but it doesn't feel like it to me, she's my baby and I love her with all my heart and I would do ANYTHING for her. 

You aren't weak, I promise you that, the fact that you didn't go totally loopy makes you a strong person. It is harder than anyone can imagine to find out there is something wrong with your baby, and it is the hardest decision you'll ever make, because either way, good or bad it is forever.


----------



## Sammy2009

Tegans Mama said:


> Sammy2009 said:
> 
> 
> I think you are a SUPER parent and I think many would agree with me on here!!! :hugs::hugs::hugs:
> 
> Not only for the fact that you gave her a chance against all odds, knowing the huge risks (and I don't think i would have been strong enough to do that to be honest) but also because of all the things you have been through, got through and kept positive for. For everything you do for her on a daily basis and your patience with her... its truly remarkable that for now (and hopefully forever!) we only have one of those things to contend with and it makes us look pretty weak when I read everything you have had to deal with in the last year and a half!!! Its amazing... I cannot believe little Tegan has been through so much and her smiling little face on the pictures just show how happy she is and how strong she has been. Shes a miracle, really. :hugs:
> 
> :hugs: Thankyou so much :) I know that we have been through a lot, but honestly while it was all happening it was a blur... I didn't realise until after just how much had happened. The way we live our lives is normal to us now, and to outsiders it does look like we do a lot (Tegan has to be catherterised twice a day, she has medication four times a day, then there is physio, a wheelchair when she's older, and she can't use her legs at all so she army crawls everywhere and has to be carried a lot of the time) but it doesn't feel like it to me, she's my baby and I love her with all my heart and I would do ANYTHING for her.
> 
> You aren't weak, I promise you that, the fact that you didn't go totally loopy makes you a strong person. It is harder than anyone can imagine to find out there is something wrong with your baby, and it is the hardest decision you'll ever make, because either way, good or bad it is forever.Click to expand...

I have just been physically sick, i think its the stress of everything over the past few days... ironic really to be sick now when i never had any morning sickness at all!!!

Are the catheters so that Tegan will be able to walk on her own eventually or can she walk with the catheters now? I didn't realise that she would have to take so much medication. I suppose its like Hydro, until it happens to you or someone you know then you don't really research it and so don't know much about it. I will always think from now on what an insite it is to learn as much as possible about different kinds of conditions. 

At least with us both posting our stories it may help some other people on here and one day and help them to learn about it more. I was worried as I couldnt find anyone or anything on here about Hydro (which makes you feel then like you are the only one!) but I was so lucky to have had the chance of getting to know all about Tegan which only proves anything can be achievable!!! :hugs:


----------



## Tegans Mama

Sammy2009 said:


> Tegans Mama said:
> 
> 
> 
> 
> 
> Sammy2009 said:
> 
> 
> I think you are a SUPER parent and I think many would agree with me on here!!! :hugs::hugs::hugs:
> 
> Not only for the fact that you gave her a chance against all odds, knowing the huge risks (and I don't think i would have been strong enough to do that to be honest) but also because of all the things you have been through, got through and kept positive for. For everything you do for her on a daily basis and your patience with her... its truly remarkable that for now (and hopefully forever!) we only have one of those things to contend with and it makes us look pretty weak when I read everything you have had to deal with in the last year and a half!!! Its amazing... I cannot believe little Tegan has been through so much and her smiling little face on the pictures just show how happy she is and how strong she has been. Shes a miracle, really. :hugs:
> 
> :hugs: Thankyou so much :) I know that we have been through a lot, but honestly while it was all happening it was a blur... I didn't realise until after just how much had happened. The way we live our lives is normal to us now, and to outsiders it does look like we do a lot (Tegan has to be catherterised twice a day, she has medication four times a day, then there is physio, a wheelchair when she's older, and she can't use her legs at all so she army crawls everywhere and has to be carried a lot of the time) but it doesn't feel like it to me, she's my baby and I love her with all my heart and I would do ANYTHING for her.
> 
> You aren't weak, I promise you that, the fact that you didn't go totally loopy makes you a strong person. It is harder than anyone can imagine to find out there is something wrong with your baby, and it is the hardest decision you'll ever make, because either way, good or bad it is forever.Click to expand...
> 
> I have just been physically sick, i think its the stress of everything over the past few days... ironic really to be sick now when i never had any morning sickness at all!!!
> 
> Are the catheters so that Tegan will be able to walk on her own eventually or can she walk with the catheters now? I didn't realise that she would have to take so much medication. I suppose its like Hydro, until it happens to you or someone you know then you don't really research it and so don't know much about it. I will always think from now on what an insite it is to learn as much as possible about different kinds of conditions.
> 
> At least with us both posting our stories it may help some other people on here and one day and help them to learn about it more. I was worried as I couldnt find anyone or anything on here about Hydro (which makes you feel then like you are the only one!) but I was so lucky to have had the chance of getting to know all about Tegan which only proves anything can be achievable!!! :hugs:Click to expand...

She's cathed because she doesn't empty her bladder properly. She pees just like a normal person, but she doesn't pee enough because her bladder doesn't work right. Her legs will never work unfortunately, the way she is now is the way she will be forever. 

I had no idea what SB was, or hydro, before I found out about Tegan. I didn't know anyone with a child with SB or hydro, and I met the first person I did know just before Tegan was born on this very site :) 

I think that through learning about other conditions, you realise that there is always someone who is far worse off than you are, and you become grateful for what you have. It took me a long time to accept that Tegan would never walk - and then I realised that there are children out there who will never speak. And I realised that, ya know, in this day and age, walking isn't all that important. She won't walk - so what, she'll have a wheelchair, and she'll get around, and she'll always have her mama to help if she needs it. If she couldn't talk, we'd accept it the same way, but thankfully she can. If she couldn't function on a basic level - that would be far worse than not walking. I am sure you understand what I mean :hugs:


----------



## Sammy2009

Tegans Mama said:


> Sammy2009 said:
> 
> 
> 
> 
> 
> Tegans Mama said:
> 
> 
> 
> 
> 
> Sammy2009 said:
> 
> 
> I think you are a SUPER parent and I think many would agree with me on here!!! :hugs::hugs::hugs:
> 
> Not only for the fact that you gave her a chance against all odds, knowing the huge risks (and I don't think i would have been strong enough to do that to be honest) but also because of all the things you have been through, got through and kept positive for. For everything you do for her on a daily basis and your patience with her... its truly remarkable that for now (and hopefully forever!) we only have one of those things to contend with and it makes us look pretty weak when I read everything you have had to deal with in the last year and a half!!! Its amazing... I cannot believe little Tegan has been through so much and her smiling little face on the pictures just show how happy she is and how strong she has been. Shes a miracle, really. :hugs:
> 
> :hugs: Thankyou so much :) I know that we have been through a lot, but honestly while it was all happening it was a blur... I didn't realise until after just how much had happened. The way we live our lives is normal to us now, and to outsiders it does look like we do a lot (Tegan has to be catherterised twice a day, she has medication four times a day, then there is physio, a wheelchair when she's older, and she can't use her legs at all so she army crawls everywhere and has to be carried a lot of the time) but it doesn't feel like it to me, she's my baby and I love her with all my heart and I would do ANYTHING for her.
> 
> You aren't weak, I promise you that, the fact that you didn't go totally loopy makes you a strong person. It is harder than anyone can imagine to find out there is something wrong with your baby, and it is the hardest decision you'll ever make, because either way, good or bad it is forever.Click to expand...
> 
> I have just been physically sick, i think its the stress of everything over the past few days... ironic really to be sick now when i never had any morning sickness at all!!!
> 
> Are the catheters so that Tegan will be able to walk on her own eventually or can she walk with the catheters now? I didn't realise that she would have to take so much medication. I suppose its like Hydro, until it happens to you or someone you know then you don't really research it and so don't know much about it. I will always think from now on what an insite it is to learn as much as possible about different kinds of conditions.
> 
> At least with us both posting our stories it may help some other people on here and one day and help them to learn about it more. I was worried as I couldnt find anyone or anything on here about Hydro (which makes you feel then like you are the only one!) but I was so lucky to have had the chance of getting to know all about Tegan which only proves anything can be achievable!!! :hugs:Click to expand...
> 
> She's cathed because she doesn't empty her bladder properly. She pees just like a normal person, but she doesn't pee enough because her bladder doesn't work right. Her legs will never work unfortunately, the way she is now is the way she will be forever.
> 
> I had no idea what SB was, or hydro, before I found out about Tegan. I didn't know anyone with a child with SB or hydro, and I met the first person I did know just before Tegan was born on this very site :)
> 
> I think that through learning about other conditions, you realise that there is always someone who is far worse off than you are, and you become grateful for what you have. It took me a long time to accept that Tegan would never walk - and then I realised that there are children out there who will never speak. And I realised that, ya know, in this day and age, walking isn't all that important. She won't walk - so what, she'll have a wheelchair, and she'll get around, and she'll always have her mama to help if she needs it. If she couldn't talk, we'd accept it the same way, but thankfully she can. If she couldn't function on a basic level - that would be far worse than not walking. I am sure you understand what I mean :hugs:Click to expand...

Yes i do, absolutely... it was only a week ago we were ruling out ever having a shunt, talked ourselves into it not being good but now we are coming to terms with things and just hope it doesnt get any worse where we will have to make new decisions. The decisions get harder the more things get worse I think. :hugs::hugs::hugs:


----------



## discoclare

Sammy,
That is positive news today, I'm very pleased for you. Will keep my fingers crossed that everything turns out well.


----------



## maybebaby3

i am so glad 2 hear that u got some good news. i shall pray that your daughter makes good progress :hugs:


----------



## WW1

It sounds like really promising news hun. I'm so glad it wasn't the "worst case scenario" you feared. Something to smile about I think!

:hugs:


----------



## Sammy2009

Thanks everyone for your support so far and just as importantly your prayers for her :hugs::hugs::hugs:

We hope and pray this will have a happy ending... the news is good so far but there is a long way to go and a lot of worry ahead now.

I will of course keep you all updated on the scan next Tuesday (which i hasten to add i am dreading already!) :dohh:


----------



## dippy dee

OMG hun i read the update with bated breath and i was in tears by the end of it, you have been in mine and my dh's thoughts so much and to see this good news and a glimmer of hope for you is amazing, i to could hit that first sonographer for you and i am possibly thinking that he should not of given his opinion in such a situation but should of possible suggested you speak to the nurses/consultant first.
I will continue to hold you close in my thoughts for Tuesday.
:hugs:

I would also like to say Tegans mum is amazing and gave me loads of support in the past and i am so glad she is here for you. xx


----------



## Sammy2009

dippy dee said:


> OMG hun i read the update with bated breath and i was in tears by the end of it, you have been in mine and my dh's thoughts so much and to see this good news and a glimmer of hope for you is amazing, i to could hit that first sonographer for you and i am possibly thinking that he should not of given his opinion in such a situation but should of possible suggested you speak to the nurses/consultant first.
> I will continue to hold you close in my thoughts for Tuesday.
> :hugs:
> 
> I would also like to say Tegans mum is amazing and gave me loads of support in the past and i am so glad she is here for you. xx

Hi, I know that bated breath feeling, I think I held my breath for the first 10 mins of the appointment continually saying in my head "just get on with IT!" (you know how they ramble) lol.

The good news is that the valve is not blocked, its dripping out the fluid when it should be flowing freely and the fact that at the moment all the tissue is there and there is no brain damage. I just hope and pray so much that it just even doesnt get worse BUT if it does then next time after another scan maybe the valve might have grown a bit and it will start to release? We can't expect miracles right now, just bit by bit a little hope. They said that if things stay the same (60% chance of this and 20% it will start to drain off = 80%) then they cannot see any reason why she wont be a normal little baby) Thanks for your hopes and prayers :hugs::hugs::hugs:


----------



## Sammy2009

Its all over... I cant type anything else, i have posted in miscarriage and loss to explain things :cry:


----------



## ProudMum

i was born with fluid on the brain.. obviously i had it whilst my mother was pregnant with me and i was born at 30 weeks, had the fluid drained and now im absolutely fine.
That was 24 years ago x


----------



## bigbloomerz

Sammy :hugs: I dont know what to say, I'm so upset for you right now, words cant describe what you are going through, but know we are all thinking of you and here to support you xx xx


----------



## Sammy2009

ProudMum said:


> i was born with fluid on the brain.. obviously i had it whilst my mother was pregnant with me and i was born at 30 weeks, had the fluid drained and now im absolutely fine.
> That was 24 years ago x

I dont know why they cant do this with our baby... they said there would be more chance if it was a mild case but its severe... the increase just after 6 days is a lot... there is more fluid and her head has grown. 

I think if it wasnt so bad they would offer us more hope, they said if it has stayed the same they could have brought her out at 34 weeks and drained it off but they think at the rate its increasing that she will suffer bad brain damage in the followinf weeks.

Im so glad your case turned out well... I have heard many more of these cases but they hold no hope for us, they said its too severe. :cry:


----------



## Sammy2009

I have asked OH to call the neurologist... she has 20 years experience and studied the MRI results... I want to hear it from her that there is no hope, that they cant bring her out earlier with some chance...


----------



## ProudMum

Sammy2009 said:


> ProudMum said:
> 
> 
> i was born with fluid on the brain.. obviously i had it whilst my mother was pregnant with me and i was born at 30 weeks, had the fluid drained and now im absolutely fine.
> That was 24 years ago x
> 
> I dont know why they cant do this with our baby... they said there would be more chance if it was a mild case but its severe... the increase just after 6 days is a lot... there is more fluid and her head has grown.
> 
> I think if it wasnt so bad they would offer us more hope, they said if it has stayed the same they could have brought her out at 34 weeks and drained it off but they think at the rate its increasing that she will suffer bad brain damage in the followinf weeks.
> 
> Im so glad your case turned out well... I have heard many more of these cases but they hold no hope for us, they said its too severe. :cry:Click to expand...

Mine was severe too, I also suffered bleeding on the brain afterwards too and given 2 hrs to live... look how wrong they were. I had no brain damage, no problems with speech, vision, learning... i was perfectly normal. Had to have hospital checks up until 5 years old but after that I was discharged and all was fit and healthy.
I actually just mentioned your situation to my dad- if youre advised to end the pregnancy I would seriously consider talking to as many specialists, drs,etc as you can... look what the odds were for me??? they were next to none, but they were all proven wrong and made to look stupid.
I wish you all the best


----------



## Sammy2009

Nobody can call us until tomorrow morning.... I dont know why they cant bring her out now... i am nearly viable. If i take the pill she will be born dead anyway, why cant we give birth to her now and give her a chance and drain off the fluid. They said she has no brain damage right now, why not give her a chance?

OH is going mad... he says that if she is brain damaged he will not stick around and its all over, that i'm gambling with his life as well. Why wont someone give her a chance?


----------



## Gizmo

Omgosh I seriously have no idea why bad things happen to good people :( 
Your OH is scared... men have a different way of bonding and its usually at delivery whereas moms usually bond as soon as the pee sticks light up :) 

The way I see it is that shes viable at 24 weeks and as long as shes a decent weight it would appear she has more of a chance on the outside.  They can give drugs to mature the lungs, the problem would be infection from the the shunt.... whos to say she cant fight for herself... if its the only hope she has then cannot see why they cant come up with a plan.


----------



## Gizmo

I found a 22 week preemie on youtube with a happy ending ;)

https://www.youtube.com/watch?v=Tql...8C644AA5&playnext=1&playnext_from=PL&index=11


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## lfernie

Hi,not sure if I shoudl post here but I just seen this post and wanted to say my brother has hydrocephelus (sp) and cerebal palsy and he was born at 26 weeks and Im not 100% sure (can't ask my mum she passed away) but i think he had hydrocephelus because he was born so early which in turn caused the cerebal palsy. He still has a shunt but maybe the safest place for your baby is still inside. (as i said I may be wrong) but :hugs: and I hope everything go's well for you and LO x


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## WW1

I'm so so sorry you've had such bad news. My thoughts are with you x

:hugs: :hugs:


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## Sammy2009

ProudMum said:


> Sammy2009 said:
> 
> 
> 
> 
> 
> ProudMum said:
> 
> 
> i was born with fluid on the brain.. obviously i had it whilst my mother was pregnant with me and i was born at 30 weeks, had the fluid drained and now im absolutely fine.
> That was 24 years ago x
> 
> I dont know why they cant do this with our baby... they said there would be more chance if it was a mild case but its severe... the increase just after 6 days is a lot... there is more fluid and her head has grown.
> 
> I think if it wasnt so bad they would offer us more hope, they said if it has stayed the same they could have brought her out at 34 weeks and drained it off but they think at the rate its increasing that she will suffer bad brain damage in the followinf weeks.
> 
> Im so glad your case turned out well... I have heard many more of these cases but they hold no hope for us, they said its too severe. :cry:Click to expand...
> 
> Mine was severe too, I also suffered bleeding on the brain afterwards too and given 2 hrs to live... look how wrong they were. I had no brain damage, no problems with speech, vision, learning... i was perfectly normal. Had to have hospital checks up until 5 years old but after that I was discharged and all was fit and healthy.
> I actually just mentioned your situation to my dad- if youre advised to end the pregnancy I would seriously consider talking to as many specialists, drs,etc as you can... look what the odds were for me??? they were next to none, but they were all proven wrong and made to look stupid.
> I wish you all the bestClick to expand...

Hi hun and thanks so much for your post it has inspired me and therefore I never took the tablets... I can't let her go this easily. I have made an appointment with the Neurologist at 4.15pm to discuss EVERY option. These are the people that I trust with her life not some jumped up sonographer/doctor (whatever he wants to call himself) pushing pills onto us. I have a million questions to ask and I want to give her a chance "against all odds" so thank you.... :hugs::hugs::hugs:

Meanwhile im still a frantic mess. OH has already stated if she has brain damage he is "walking" god you really get to know people when they say stuff like this. Her life is more important than my relationship so if he wants to walk then I guess he better get packing!

Does anybody happen to know... say we did bring her out at 24/26/30 weeks (we know we cant keep her in there for long due to the increase in fluid) and she suffered bleeding of the brain and was brain damamged, would they be able to check for this after she was born and would we be able to decide to take her off life support if this happened and we knew she had no quality of life or was suffering? I dont want her to suffer.... be kept alive for the sake of it and i'm scared they might tell us that its too late, we took the chance now deal with it! Today im scared but i feel stronger. I have stopped crying and now just want to be as strong as I can for her and try and make the best decision for her. If they wont help us, dont think it will turn out, have huge complications then I have to take that into consideration as I trust the advice of the neurologists we have and not the doctors at that hospital. The Neuro has 20 years experience so I feel safe with her. :hugs:

Also, thanks for everyones advice and support it has meant the world to me when I dont feel that apart from my daughter anyone is backing me right now. Please continue to add any success stories and I guess stories that have not ended so well sadly as it will keep me grounded and try to help with the awful decision we have to make. Surely she will have a survival rate at 24/26 weeks... I am sure I have read of premature babies living at 23 weeks before, does anyone know of anyone that this has happened to and what were the final results? Thanks xxx


----------



## bigbloomerz

I think you have done the right thing hun, I had a word with my OH last night about what we would do, and he said he would stop at nothing to find out more information first, we havent had much luck with sonographers so far anyway, so going to the professionals is the best thing you can do.
Have still got everything crossed for you. xx Good Luck today xx


----------



## Sammy2009

Gizmo said:


> I found a 22 week preemie on youtube with a happy ending ;)
> 
> https://www.youtube.com/watch?v=Tql...8C644AA5&playnext=1&playnext_from=PL&index=11



Hi hun,

I have only just seen this and I burst out crying...

What an amazingly inspirational story, things like this really help me and give me strength and hope so thank you so much for sharing that with me :hugs::hugs::hugs:


----------



## WW1

You're absolutely right to get all the information you possibly can. No-one will be able to give definites but they will be able to equip you with as much info as they can for you to make an informed decision.

My heart goes out to you - whatever decision you finally decide to make will be based on love for your LO and will therefore always be the right decision xx

:hugs:


----------



## Sammy2009

WW1 said:


> You're absolutely right to get all the information you possibly can. No-one will be able to give definites but they will be able to equip you with as much info as they can for you to make an informed decision.
> 
> My heart goes out to you - whatever decision you finally decide to make will be based on love for your LO and will therefore always be the right decision xx
> 
> :hugs:

Thanks hun... some people may think I am prolonging the pain/inevitable (OH) but I need to give her the best chance possible... if there is any! The options in Holland are not as good as those in the UK i dont think but I cant go abck to the UK as I dont live there anymore and you have to be registered on the NHS to receive treatment, give birth, but i'll push for what i can :hugs:


----------



## xxxjacxxx

Can I just say what an incredibly brave lady you are:hugs:
I wouldnt wish your heartbreaking decision on anybody right now, but just the way you speak about it, the way your handling it...my heart goes out to you. I can tell by the way you talk about your little girl that she is the most important thing in the world to you and I'm glad you are stopping at nothing to get proper options. I know whatever the outcome you will make your decision on whats best for your LO.
My best wishes for that chat today and I hope against hope that they find just a little bit of hope.....thats all she could need.........:hugs:


----------



## AP

Premature babies can suffer brain bleeds after birth. Its very common but doesnt mean the end! And doesnt always result in problems!

Premature babies are scanned after few days after birth to see whats going on. We had the most severe case scenario, a Grade IV bleed, and fluid on the brain. The fluid drained off itself and the bleed healed and it is the scaring that will cause any problems.

In America I know that in Alex's case we would have been offered the chance to turn off her support. I honestley am astonished that they do this!!!!!!!!!!!!!!

Alex is fine! Theres a chance of celebral palsy but even then thats just a chance. Theres a few of us in the preemie section with babies with brain haemorrages due to prematurity.

And then theres 24 weekers with noooo problems!
Being through prematurity myself (I was 29 weeks) and Alex being 27 weeks, I feel a lot braver about prematurity.

Every day counts, every day she gets a little bit stronger, and you will obviously have time, unlike me, to get two shots of steroids to help her lungs.

My hospital, that looked after Alex, had not long saved a 23 weeker. xxx


----------



## amy2boys

You story has imspired me to tell you about my son. He was born unexpectidly at exactly 26 weeks. I had always measured small and and they are positive my dates were 10 days behind making him 24 weeks. He was just 690grams at birth (1lb 8oz) and was about 6 inches long. I had no steriod injections and a very stressful pregnancy and birth.
He was very ill for a long time. And we were told on a number of occations that he would not make it. They do brain scans on premature babies very often and any damage is usually picked up very early. But bleeds def do not always lead to long term brain damage. 
My little boy, Joshua fought so hard and finally came home after over 3 months at just 3lbs. Today he is nearly 2 yrs old and doing amazing. He is still very small at 19lbs (6-9m clothes) and is still being tested for hearing loss, but he is like any other 18mth old!

The technology for premature babies now is so advanced. I am personally in contact with about 7 babies all born at the same gestation who are all now fine. Girls do alot better than boys. Also if you can get to 28weeks, the odds are SO much better. The bad points (sorry to tell you this) is that alot af babies do not make it. There were alot of unhappy days on the unit where babies did not make it and that is so so sad. Joshua's time in hosp was awful, the worst time in my life ( And I am quite a strong person) and I would not wish is on anyone. Also ending the suffering is not always an option. They will do everything to fight for your baby when they are here, even if that means brain damage at the end of it. The option to terminate care was only given in very very few cases. 

Have a look at the BLISS website forum. It will fill you with hope. x x

Could they scan you every few days and see if you can get as near to 28 weeks...?

I wish you all the luck in the world. Whatever you decide, you will have a hard few months ahead and I hope you have some loving family support around you.

If you need anything else just pm me.

x x


----------



## Sammy2009

sb22 said:


> Premature babies can suffer brain bleeds after birth. Its very common but doesnt mean the end! And doesnt always result in problems!
> 
> Premature babies are scanned after few days after birth to see whats going on. We had the most severe case scenario, a Grade IV bleed, and fluid on the brain. The fluid drained off itself and the bleed healed and it is the scaring that will cause any problems.
> 
> In America I know that in Alex's case we would have been offered the chance to turn off her support. I honestley am astonished that they do this!!!!!!!!!!!!!!
> 
> Alex is fine! Theres a chance of celebral palsy but even then thats just a chance. Theres a few of us in the preemie section with babies with brain haemorrages due to prematurity.
> 
> And then theres 24 weekers with noooo problems!
> Being through prematurity myself (I was 29 weeks) and Alex being 27 weeks, I feel a lot braver about prematurity.
> 
> Every day counts, every day she gets a little bit stronger, and you will obviously have time, unlike me, to get two shots of steroids to help her lungs.
> 
> My hospital, that looked after Alex, had not long saved a 23 weeker. xxx

Hi, thanks for your story its very helpful... can you tell me a little about cerebal Palsy as I dont know anything about this condition. If she had it how might it affect her? Thanks :hugs:


----------



## Sammy2009

amy2boys said:


> You story has imspired me to tell you about my son. He was born unexpectidly at exactly 26 weeks. I had always measured small and and they are positive my dates were 10 days behind making him 24 weeks. He was just 690grams at birth (1lb 8oz) and was about 6 inches long. I had no steriod injections and a very stressful pregnancy and birth.
> He was very ill for a long time. And we were told on a number of occations that he would not make it. They do brain scans on premature babies very often and any damage is usually picked up very early. But bleeds def do not always lead to long term brain damage.
> My little boy, Joshua fought so hard and finally came home after over 3 months at just 3lbs. Today he is nearly 2 yrs old and doing amazing. He is still very small at 19lbs (6-9m clothes) and is still being tested for hearing loss, but he is like any other 18mth old!
> 
> The technology for premature babies now is so advanced. I am personally in contact with about 7 babies all born at the same gestation who are all now fine. Girls do alot better than boys. Also if you can get to 28weeks, the odds are SO much better. The bad points (sorry to tell you this) is that alot af babies do not make it. There were alot of unhappy days on the unit where babies did not make it and that is so so sad. Joshua's time in hosp was awful, the worst time in my life ( And I am quite a strong person) and I would not wish is on anyone. Also ending the suffering is not always an option. They will do everything to fight for your baby when they are here, even if that means brain damage at the end of it. The option to terminate care was only given in very very few cases.
> 
> Have a look at the BLISS website forum. It will fill you with hope. x x
> 
> Could they scan you every few days and see if you can get as near to 28 weeks...?
> 
> I wish you all the luck in the world. Whatever you decide, you will have a hard few months ahead and I hope you have some loving family support around you.
> 
> If you need anything else just pm me.
> 
> x x

Oh right i see.... god we are in a right catch 22 position. If she is born now and has severe brain damage then we not be able to let her go with dignity. If I have her by C-Section and she doesnt make it not only will we have lost our daughter but we wouldnt be able to TTC for another year even if we wanted to though I cannot even think about TTC right now obviously its just a thing I have to think about for the future (and at 38 i dont have much time left!) If she stays in there what are the chances of brain damage since the fluid is increasing a lot at the moment.... then on the other hand we could have her and she could get over this and be a happy normal baby (although she will always have Hydro but that can be treated) I cant carry her to term, her head will be too big and have possible really badly brain damage by then, I cant see how things will go say until week 28 and then end her life if she is brain damaged as we would have passed the 24 week cut off. I could just cry with the options right now.... I feel about as low as i possibly could be the more I learn about different situations, everyone holding a huge risk :cry::cry::cry:


----------



## AP

https://www.nhs.uk/Conditions/Cerebral-palsy/Pages/Introduction.aspx

This should help, but it a huge spectrum, many people go on to lad normal lives.

With plenty of physio etc the risks of it can be helped :)


----------



## Sammy2009

Well this is how the appointment went with the Neurologists:-

We arrived there and were seated and then moved to a room where we could see the scan pictures that were taken yesterday. The nice lady that I like, who at first gave us some hope (although she never promised anything) appeared with another lady who I had not met before but seemed nice enough. We started going through the scan pictures and she showed me where the lining had increased. She explained it like it was a balloon and that on the MRI it was deflated slightly indicating that it was ok'ish but that at yesterdays scan it was now round and inflated indicating addition pressure due to increased fluid. This is not good and will definately get worse. Some weeks it may increase more than other weeks and nobody knows what will happen but it won't stop.

These are the scenarios I asked them about:-

To be brought out at 24 weeks - They are not going to resussitate her UNLESS i went into natural early child birth when they would try.

To be brought out at 28 weeks - She will be weak and her lungs (even if given steroid injections) will be weak and will probably experience breathing problems of some kind, asthema, etc. She is not a normal premature baby, her brain is very very fragile at this stage, her organs as well but on top of that she has Hydrocephalus bad. Her head would have to be drained either inside me before a natural birth or before a C- Section, both putting me at risk and her as well. To expect her to live through the premature birth and Hydro is not even barely thought about in the hospital. She would spend months in hospital probably fighting infections. She could aquire Cerebal Palsy, hearing problems, breathing problems, bleeding to the brain (although they said small bleeds were not a problem) which could cause further brain damage on top of the Hydrocephalus problem. That 1 + 1 problem is more than two as far as they know. They said we have to realise she is not just premature, she has much more to contend with than that which is bad enough, she has Hydro as well, badly and she is very sick.

To wait and see how things progress with the Hydro - Yes we can continue the pregnancy but the fluid will increase and the head, we may leave it until 34 weeks for example but the hospital will not guarantee that they will bring her out at 34 weeks. Her Hydro might be considered so bad (damage to brain) that they will not force her through labour being so poorly and therefore I will have to continue the We will then be over the cut off for a termination and HAVE to continue the pregnancy and care for a severely brain damaged child (which is what they anticipate will happen although they cannot say for 100%)

We will never be able to decide ourselves when they can take her out... it will be the decision of the doctors, if and when they want to or are going to. If they decide for one reason or another that they are not going to take her out then thats thats... its a lottery. They said if left until 34 weeks the prognosis would not be good.... full term = forget it, we are just basically asking for trouble (my words not theirs) 

To take her to full term would mean her head would be too big to give birth to her naturally and therefore we would have to have a C-Section. Since the head would be so big and even though its a C-Section it would cause pressure on my uterus and difficulties getting her out and may scar the uterus doing so meaning I may not be able to have kids again if the damage was severe. By then the chances of her being severely mentally handicapped are 85 - 90% certainty. There is a 10% chance that she would not be affected much (and they can't guarantee that really)

I asked in their opinion if it was THEM what would they do?

Lady No.1 said (or should i say bailed herself out replying with) "My husband says I am a different person when I am pregnant so I don't know what I would do, it would be impossible for me to say (pre-rehearsed many times i presume but hey who can blame her)

Dr Peters said: I have to ask myself the question looking at the results and prognosis "Could I/Would I want to care for a severely mentally handicapped child who might be dependant on me for the rest of their lives. Have trouble finding work, getting a girlfriend, living independantly?" Do I want to take the chance that this will probably happen? I suppose my answer is no to this question.

I asked her if we could bring her out soon, put her on life support and then after the birth check for brain damage with an MRI scan, if there was damage could we selectively ask to take her off with dignity and let her go so she would be subject to a life of mental disability - She said that could not be guaranteed and that is say at 34 weeks she was breathing independantly then the doctors would not let her die, brain damaged or not, we would have made that decision to keep her alive no matter what, even if she was non functional and we would have to care for her like that. No guarantees.

So thats quashed every option we have.... its a no win, no win situation unless we want to take the chance of having a severely handically, mentally brain damaged child at the odds of 85-90%. I know the doctors have been wrong before, I have read 100's of fantastic success stories but what about the unsuccessful stories? Maybe those children are so brain damaged they can't come on a forum or even type. Maybe their parents don't want to share their doom and gloom and upset themselves to tell their story. Maybe if they had their time again (like our next door neighbour with their severely brain damaged child) they would have chosen different options. I can't take that chance.


----------



## Blah11

:hugs: Sorry you didn't get the news you wanted :( What a horrible and selfless decision you've had to make.


----------



## Sammy2009

Hi,



I am not going to take the pills to stop her heart... though if people have taken this option then i dont blame them either its personal choice, there is no good or bad thing to do its just how people would handle it better and for us its this way. It wont make any difference to the outcome as they will not offer her support when she comes out anyway, alive or not. It just means we may be able to say goodbye to her before she takes her final breath.

Its all about funding this... they could, if they wanted to, monitor how she went over the next few weeks, bring her out before brain damage set in but they wont. They know MRI scans cost a fortune to do all the time and to keep the baby on life support as well. There is a price on her life that they are not willing to spend 

I hope she will make it through the journey and survive just long enough for me to tell her how much i love her and how much she was wanted and how I only wanted the very best for her... to reassure her that her grandad is now going to look after her in heaven so she will be spoilt rotten.

I will never forgive the Law for not trying to help her further... maybe one day this will happen to one of them (though i wouldnt wish this upon anyone) and they will realise that money is no object against the chance of life.


----------



## kirsten1985

:hugs: I am so sorry, I have read through all of this and don't know what to say...you have made some very brave decisions, I can't even begin to imagine how terribly difficult this is for you. :hugs:


----------



## xxxjacxxx

I'm so very very sorry you didn't get any positive news today. :hugs:

If your not going to take the pills, then what is happening now? Are they going to take her out at 24 weeks? Sorry I'm a bit confused.:wacko:


----------



## Sammy2009

The pills were just to stop her heart... so she would be born dead. Sometimes people prefer this way. Yesterday I was never even told i had an option of taking these pills I was just told to take them and go back today at 4pm to have two vaginal tablets and wait for labour.

Unable to take them, i made OH call the hospital and request that we speak to the Neurologists which we did do. I dont have to take the tablets if I would like her to stay alive. She may make it through childbirth and survive for a few minutes or seconds, fight to breathe. They will not assist her or help her so she will soon die as her lungs will not be strong enough to work independantly on their own. So all in all, if I went into labour early on my own they would support her and assist her but because we have to select a termination due to her condition and the odds, they are just going to watch her die! :cry::cry::cry:


----------



## Sweetie

Thinking of you and hoping for the best :hugs: I wish I knew the right thing to say. I've been following your thread and commend you on everything you have done for your daughter. I'm sure that she knows you love her :hugs: I'm sorry that you didn't get the news you wanted to hear today


----------



## Sweetie

Sammy2009 said:


> The pills were just to stop her heart... so she would be born dead. Sometimes people prefer this way. Yesterday I was never even told i had an option of taking these pills I was just told to take them and go back today at 4pm to have two vaginal tablets and wait for labour.
> 
> Unable to take them, i made OH call the hospital and request that we speak to the Neurologists which we did do. I dont have to take the tablets if I would like her to stay alive. She may make it through childbirth and survive for a few minutes or seconds, fight to breathe. They will not assist her or help her so she will soon die as her lungs will not be strong enough to work independantly on their own. So all in all, if I went into labour early on my own they would support her and assist her but because we have to select a termination due to her condition and the odds, they are just going to watch her die! :cry::cry::cry:

Would you be given the opportunity for steroid shots if you did go into early labour? Or would this just be possibly extend the inevitable as far as they are concerned? I'm sorry to ask...


----------



## Sammy2009

Sweetie said:


> Sammy2009 said:
> 
> 
> The pills were just to stop her heart... so she would be born dead. Sometimes people prefer this way. Yesterday I was never even told i had an option of taking these pills I was just told to take them and go back today at 4pm to have two vaginal tablets and wait for labour.
> 
> Unable to take them, i made OH call the hospital and request that we speak to the Neurologists which we did do. I dont have to take the tablets if I would like her to stay alive. She may make it through childbirth and survive for a few minutes or seconds, fight to breathe. They will not assist her or help her so she will soon die as her lungs will not be strong enough to work independantly on their own. So all in all, if I went into labour early on my own they would support her and assist her but because we have to select a termination due to her condition and the odds, they are just going to watch her die! :cry::cry::cry:
> 
> Would you be given the opportunity for steroid shots if you did go into early labour? Or would this just be possibly extend the inevitable as far as they are concerned? I'm sorry to ask...Click to expand...

If i went into labour spontaneously i guess they would give the baby steroid injections.... letting her go by choice (for want of another word!) they will not offer her any support at 24 weeks. I dont why they can support her if it happens naturally but not if we have to select to let her go. IF they were to help her to breathe if she was born alive then she may have a chance at life, have her brain drained but they wont...we have asked. :cry:


----------



## AP

Sammy2009 said:


> all in all, if I went into labour early on my own they would support her and assist her but because we have to select a termination due to her condition and the odds, they are just going to watch her die! :cry::cry::cry:

:cry: this makes me so mad, I am so sorry Sammy :hugs:


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## fluffyblue

Get on a plane come and stay with me and give birth in the UK they would support you here, god I cant believe what politics does, you are one brave person and and I admire you for your decisions. 

Sending you all my love xxxx


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## cheeselover

Oh darling, my thoughts are with you during this difficult time x


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## Sammy2009

fluffyblue said:


> Get on a plane come and stay with me and give birth in the UK they would support you here, god I cant believe what politics does, you are one brave person and and I admire you for your decisions.
> 
> Sending you all my love xxxx

Thats very kind of you hun :hugs:

Thing is I wish I could that... really I do but we live in Holland, we have an 11 year old daughter here in school and both have jobs (my work is fully understanding but Allans will probably give him two days off for her death and then expect him back) and what we really have to look at is that she will be in hospital for maybe months in another country, with many complications. It would mean staying in a hotel which would cost us a fortune also my daughter has to go to school and there is nobody here that could look after her while we were there. My mum lives in Spain and Allans mum and dad live two hours away but she couldnt stay there anyway as first of all they both work and also its nowhere near her school. It would mean relocating to the UK and I dont see how we could do that. Although they would probably help her there at 25 weeks it would still be the same scenario, premature and all the problems to deal with as well as operations on her brain, the outcome could be worse case scenario and then again it might not be but we are not being very lucky with odds at the moment. We had an 80% chance that the Hydro would stabilise or decrease but we were in the 20% where it decreased. This time we are in the 85-90% chance of her having severe brain damage and its a big risk for us to take for her as I don't want to bring her into the world like that, not knowing I took the chance and lost. I think however much I would love to take the chance that with the huge increase in fluid and her head circumference in just 6 days that its going to be better to let her go peacefully. I have really appreciated all your help, support and advice, you have been really helpful to us. If her odds were better, the Hydro was mediocre and the Neurologists though she might just have a glimmer of hope then I would continue. Believe me its breaking my heart to make this decision but I think we have to let her go to be honest. :hugs::hugs::cry:


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## mamato2more

I cannot imagine what you are going through right now, but my prayers are with you, your oh and that baby!


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## Augustbaby

I'm so sorry this has been a very distressing, drawn out process for you. Reading all your previous posts where you seemed in turmoil with all the options and decisions, you seem now to have accepted the situation somewhat, and made what can only be the hardest decision.
I just hope your OH can be supportive to you in this time, he seems to be handling it differently to you, but you must need each other a lot.

Your baby will be waiting for you in heaven, with her grandad, in no pain. She'll have a whale of a time.


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## Wobbles

Can't imagine your pain hun ...I wanted to send you a big big hug x


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## wannabubba#4

So sorry to read this hun, I am so heartbroken for you,I am in tears reaing these posts. You are so brave to come on here and tell your story.

I hope the birth when it happens is straightforward and uncomplicated for you, and that you get the chance to hold,cuddle and say goodbye to your little baby.

This truly is a horrible situation you have been thrust into, I really feel for you and your family.
xx


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## pinkmummy

I have just read your whole thread and I just wanted to say, how incredibly brave you are! I am so sorry you haven't got the results you wanted but I totally understand and respect your decision.

I really hope everything turns out ok for you all hun :hugs: xxx


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## amy2boys

I am so sorry it has come to this for you. Although I have to say, I think, all things considered you are def making the correct choice. 
In the 2yrs since I had my son we have met a vast majority of very severly disbled children and families, it is extreamly hard work and pressure on the parents and mostly other siblings. And although they do give days of emece joy, the continuous pain and suffering is heartbreaking. 
I have very personal experience of this and the mother does say now..50yrs on if only she had these choices.
My sister had her baby at 21wks due to complications and even though she only lived a short time. She has a whole lifetime full of love and peace that her daughter had no pain and suffereing which comforts her everyday.

I will be thinking of you and your very special little girl
x
x


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## Sammy2009

And so far today has brought me....

My friend emailing to say that her baby has died (she was 7 weeks pregnant and on her 18th miscarriage/blighted ovum/chemical pregnancy)

and...

Work called me to say that a close work colleague, Maria, collapsed in the shower yesterday and was found dead from a heart attack. She was 33 years old and the happiest person I have ever met in my life. She was 7 weeks pregnant (although she hadnt told anyone yet)

Just a few things to deal with along with my own sorrow...when will this ever end? :cry::cry::cry:


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## Jemma_x

:hugs:


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## pinkmummy

:hugs: sweetie :( xx


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## KKSARAH

Thinking of you :hugs: your one brave lady and hope you get to say goodbye the way you want too:hugs:

Baby your one special little girl and I think you know how much your Mummy Loves you :hugs: 

Sxxx
:hug:


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## dippy dee

Sweetie my heart goes out to you and my thoughts are with you, you have fought so hard and i hope things start to get better for you, i hope the labour goes smooth enough for you and that you get to spend some time with your special angel.
I am sorry to hear about your friends.
Stay stong sweetheart you know i am here if you need to chat xx


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## sparklesmum

I am so sorry to hear about your loss - I have been through the same, we had to let our son go at 23 weeks - like you , I had to make the decisions in a short space of time after a very bad prognosis from medical staff. It was hard, but you will both find the strength to get through it - I promise you that. 

I know the ladies on here have all offered you wonderful, heartfelt support, but I also turned to a site called aheartbreakingchoice.com. I'm probably not supposed to promote other sites on here (sorry) but it is 100% dedicated to women who have had to make this terrible decision after receiving fatal diagnosis. I found the ladies on there were amazing, and to be able to share my thoughts with people who knew how it felt, really helped me on the road to healing.

Anyway, I dont really post much on here, but you can always PM me if you feel I could offer you any support right now. Otherwise, there are no words I can say - just stay strong for each other.

You will be in many peoples thoughts and prayers during this difficult time.

Laura xx


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## Kelly9

I am so sorry you have had to go through all this and will have to go through a bit more. I hope that in the end you feel relieved and comforted knowing you made the best decision you could. You won't stop loving your little baby ever, I hope you get some time with her right after to tell her the things you need to.


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## Junebug_CJ

I'm so sorry about your situation, I can't even begin to imagine how difficult it is for you to make such a difficult decision, but I have to express that I find you've made it with your baby's best interest in mind, no matter how difficult. It was selfless, loving and truly the definition of being the best parent you can be. My thoughts are with you and your family in this difficult time...
CJ


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## debjolin

:hugs: thinking of you and your family at this difficult time.


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## maybebaby3

my heart goes out 2 u :hugs: your story brings tears 2 my eyes. you are so brave xxx


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## Sammy2009

I don´t know if I will be allowed to post my Birth Story in the birth story section. We are in the process of creating a "Born Too Soon" page for our baby and I will send the link when we have completed it but this is what happened....

*The Journey to Hospital*

We left for hospital, we still hadn't really made our decision but we were going anyway even if we turned round and came back. We had already called the Neurologists that morning in Belgium for a second opinion but they were unable to help our little baby and now we were going to try the UK. We finally got hold of Dr. Farrell, explained the situation, the results we had been given and we asked him if he could help us. He told us the same as the Neuro's in Holland and the UK that at 24 or even 26 weeks, for her to be born and expected to cope with prematurity and Hydrocephalus operations that this would be too much to ask her for. That her condition was very far advanced, in the bottom end of the severe category and that she would be sure to be born with brain damage if not from the Hydro, from some other complication during birth. I told him of the success stories I had read, of baby Tegans story, who he treated, but he said if he was to give us odds on her not being brain damaged they were to be 5 - 10% chance, for her to born with severe damage 75% certainty, with some brain damage 90-95 per cent. He explained to us that although some people take this chance and beat the odds, that the stories we read are rare. That of all the people that take that chance and of every story you read that you don't read the other stories of all the people that have risked it and it didn't work out or their children died anyway. He said that "normally" parents would choose to end the pregnancy at this stage and that even if the child did not appear to be affected after birth, that the chances that somewhere down the line, even in a few years time, that some problems would be there, creep up on us, that we had to think of our other 11 year old daughter as well. We thanked him for his support and kindness to answer our questions and ended the call. We cried.

We arrived at the hospital in a numb state of mind... we got upstairs to the delivery floor and were asked to sit and wait. Our appointment was at 3pm. I held back the tears as pregnant women about to give birth waddled past me, smiles on their faces, holding their tummies, soon to be expecting their little ones in their arms, for me soon that was to happen too but it wouldn't be a happy ending like theirs, it would be a sad loss. At 5.45pm a doctor came and took us to a room, apologised for the delay and consulted us briefly before we were seated back in the corridor again.

Finally at 6pm we were shown to a room that we were to sit in and wait for the counsellor (it was procedure) She arrived, I could barely look at her. She started talking to us about how we wanted to bury her, our options. I looked away, stared out the window, in ignorance if you like. She was asking me questions but I wasn't listening. Forced into answering I told her "How can I talk to you about burying my daughter when she is kicking so hard inside me? She isn't dead yet you know and therefore I cannot talk about this" She left shortly after that, me thanking her softly before she went. We were left in the room alone, crying.

We were silent in the room for a while and this was killing us so decided to go outside to find some magazines. It was freezing outside but we found the train station nearby and got something to read. In some strange way everything seemed to be normal outside... I hung onto Allan, waddled along pregnant... outside it didn't appear real, that in a few hours we were to give birth and say goodbye to our baby daughter. I wished I could stay outside, away from reality.

*The Start of the Induction Procedure*

*Friday 8th January 2010*

At 6.30pm we were taken to a our own private room where we would give birth. Another bed was brought in for Allan, my husband, and I got changed into my bedwear. At 7pm the doctor on shift came in and introduced herself and explained the procedure. She was very nice and compassionate and seemed a caring person. She sat beside me and felt my uterus and then inserted two tablets inside me. She said it might take between 24 and 36 hours for them to work but everyone was different. At 11pm the procedure was repeated as there was still no change. This would happen every 4 hours but not through the night so this was the last time I would take the tablets until the next morning. I was given two sleeping tablets but had a restless nights sleep regardless.

*Saturday 9th January 2010*

We were woken early so that they could give me some more tablets, they gave us some time to wake up properly. At 8am the doctor came round again and checked my cervix, no change, and gave me another two tablets. The nurses and doctors were all lovely to me telling me to just to call them if there was anything I wanted or needed. Allan was being really supportive as well, offering to fetch me drinks and magazines or something to eat. We waited.

At 12pm I was supposed to take some more tablets but nobody came. I heard babies crying, obviously having just been delivered... I cried myself knowing that I would never hear my baby cry. I hadn't feel her move today and wondered if she was even still alive, a little later I was to feel a half hearted kick, I didn't know it but this would be the last one I would ever feel from her. At 1.45pm the doctors finally made it to my room to give me two more tablets. My uterus was starting to feel tight now and uncomfortable but there was no pain, except in my heart. The day went slowly until the next round of medication was inserted to induce me, this was at around 7pm. The doctors could now feel my uterus was tightening and opening, there was some pain now, although not much. They explained to me that the birth could happen very quickley. That all of a sudden my uterus may open and the baby could come out without me even pushing. I felt scared. It might all happen too quick for me to be able to take in. I was offered an Epidural and decided to take the option as I was firstly worried that if I refused and the pain got worse that the Anaesthetist would not be available when I needed him/her or that it would all happen too quick and it would be too late to have an Epidural then. Twenty minutes later she arrived. An IV drip was inserted into my hand, my blood pressure taken and my temperature. My blood pressure was low and my temperature high at 37.8 and I was told I had a fever. An Epidural was then inserted and there were tubes and pipes everywhere. I felt scared by all the monitors and everything which was happening to me all at once, i felt confused and all of a sudden everything started to become even more real.

Allan went out for some fresh air, he came back and said that he had been to the "Silent Room" and lit a candle for our baby and written some words in the book. I thought this was a lovely, unprompted gesture.

After what seemed like an eternity, everything was in place... the nurses left and I was in no more pain. I could feel no more kicks and I wouldn't do even if my baby was alive because the Epidural would stop me feeling her. It seemed the end already and I felt sad and gutted that I would never feel her inside me again.

At 11pm the doctor returned to give me two more tablets. She said she could enter my uterus with one finger now, whatever that meant, but she didn't know how long it would take, everyone was different as she had already said. The nurses continued to come and go, offering us drinks and food, support and compassion... sometimes stopping for small chat, some words of encouoragement, listening to my story and how hard this decision has been to make for us both. They were treating us really well but it didn't and couldn't compensate for the real reason we were there and for the outcome we were shortly to expect.

I was offered another two sleeping tablets but I was worried that I would wake up and she would be there, already born, that the sudden opening and not having to push would have happened while I was asleep. I was assured that this wouldn't happen, that when she was ready to come then I would feel pressure and that this would wake me up. I fell asleep.

*Sunday 10th January 2010 - The Birth of My Beautiful Baby Daughter*

At 3.15am I woke up to an unusual feeling... a pressure I had never felt before. It wasn't bad but it was scarily different. It was coming and going but quickley. I called to Allan but he was asleep so I left it for a while. It continued to happen but i didn't know if this was "it" I called Allan again but he was still asleep and didn't wake. I thought I would leave it a while longer, see what happened. I soon found out I was not going to be able to leave it for long as the next cry was in pain and Allan woke up. I asked him to fetch the doctor, something was happening. It seemed like forever before the doctor arrived. I thought the Epidural must need topping up as I could not understand why I was in pain. I asked her if she could top it up and she examined me. She said I was ready to give birth and I would have to push through the pain now, that there was nothing they could give me that would stop this sort of pain. I was asked to push.

I gave a couple of hard pushes, there was a huge rush of water and I was told to stop... she shot out, she was here. I couldn't see anything but watched as Allan held his hand to his mouth and looked away in shock. The doctor asked him if he wanted to cut the cord but he shook his head. The doctor looked at me and asked if she should cut it, I told Allan he should really do this as if he didn't he might regret it, that she was still his baby daughter. He agreed and cut the cord in tears. I was asked if I wanted to hold her, i nodded my head. She was placed on top of me. She was the smallest thing I had ever seen in my life and she was beautiful. I was told she was born sleeping. I wasn't surprised as I was sure she had given up the will to live before I had the Epidural when I couldn't feel her.

I held her in my arms, cuddling her, wanting her to wake up and cry like I had heard all the other babies. I knew she could never now do this. I looked at her little body, all perfectly formed with the smallest hands and big feet like we had seen on the scan pictures. Her little head was obvious to the Hydrocephalus but you could not see that it was mishapen from the front and it didn't matter to me because she was perfect in every way no matter what. The doctors were surprised that she had eyebrows.... prominent dark ones. She had fingernails as well We could also see she was to take after my husband and have dark hair and we could see her little eyelashes. She had my husbands nose as well. I wished I could see what colour her eyes were but she had them tightly closed and I wasn't going to force them open. We were asked if we wanted an expert to look inside her head, to tell us the exact reason for her death but i said I didn't want her cut apart, we knew the reason for death and to find out in intricate detail why it happened, would not bring her back.

I lolled in and out of sleep for the next couple of hours, exhasted from the trauma and seeing that our little baby had died. I hoped I would have the chance of seeing her try to catch her first breaths and that is why I never took the pills before the induction to stop her heart, to kill her. I was told she would have felt no pain. That the tablets would have slowly restricted her airflow in the umbilical cord and she would have have slipped peacefully into unconsciousness before the birth, there would have only ever been a small chance she would have been born alive and she would have only lasted for a few minutes. We knew this already... I was never going to subject her to any pain whatsoever, she never deserved that.

Two more tablets were inserted into me so I could try to give birth to the placenta which had not come out. They repeated this over the next few hours and I kept trying to push but nothing was happening and they told me I would have to go into Theatre to have it surgically removed. I didn't care anymore... things could not get any worse than they already had done anyway so I was never expecting to be let off easily by something actually going right for a change. They prepared me for surgery and I was wheeled down there. They decided to use the Epidural for pain relief and therefore I was going to kept awake through the whole procedure which I didn't really want but I didn't have the strength to fight them and so I just let them do what they had to do.

They had to top up my Epidural to make it five times stronger that the one that I had been given in order to give birth with so I would be able to cope with the pain. I suddenly felt really scared and worried that perhaps something would go wrong and I would not make it. Or they would not be able to get it out. My legs were put in stirrups and I had so many things pushed inside me I can not even imagine what they all were. I could feel the pressure, although no pain really, just the force of the instruments on my organs made me feel some sensation.

Finally, it was removed after what seemed like forever and I was taken to the recovery room. I lay there while they poked and prodded me some more taking my blood pressure, checking if the Epidural was wearing off, my temperature. I was getting tired of the fussing round me and just wanted to get back to my daughter, to hold her, to tell her how much I loved her and how I tried to do everything I could for her but they wouldn't let me go. My body from the waist down was completely immobile. I couldn't move or feel a thing, it was completely numb. I was covered in heated blankets due to my fever and my temperature had risen. Another patient got wheeled in next to me and I heard the crying of her baby, heard her partner talking to her. I felt dead inside, wishing she would just go away, feeling resentment that it was not me in her place.

After about thirty minutes I was taken back to my husband and baby. I felt anger now, at everyone, the world in general, for taking my little girls life. I snapped at Allan, ordering him to do this and that, reprimanding him when he didn't do it correctly. The nurses continued to come in and out every five minutes asking us things, checking me, offering us things but i just wanted them all to go away and leave us in peace so I could greave for my baby. Allan asked them kindly if they could leave us alone for a while and the place was finally quiet. 

I held my daughter, took pictures of her... many, many pictures. While I was in theatre the nurses and Allan had taken some ink prints of her feet and hands and put them on a lovely pink card with her name and weight. We called her Shaylee, it was a name we all liked from quite a few weeks ago, I remember reading it out and we all said we liked it. We never discussed another name after that and so in my head, she was always "Shaylee". She was 620 grams (1.36 lbs)

Later Allan mixed some plastercast that I had previously bought from a shop and we took some hand and foot prints. I was so scared pressing her tiny hands into the mixture that I would break her and then I would never forgive myself for hurting my innocent daughter, but I didn't. I wrote her name and date of birth on the cast with a small needle, not that I was ever going to forget either.

I put the two cuddly rattles and small cuddly sheep next to her body to keep her warm and wrapped her in my own fluffy pink blanket. Her skin was so fragile that through the birth and being handled it was starting to peel a little in places and although she could not feel the pain, for some reason i could feel it for her in my head. I thought it must be sore and nothing made me think that she could not actually feel it herself. I kissed her little head and told her how much I loved her, how much I would always love her and how I would do the very best I could for her while we were together and when we are parted.

We had to decide what to do with her little body... there was a few options. one was to have her cremated with some other babies at the same time which could take a couple of months to do. In the meantime she would wait in the hospital Morgue, alone. I ruled this option out straight the way. In my eyes she deserved only the very best and I was not having her burnt with other babies and then thrown away, this was NEVER going to happen. Another option was to have her buried or cremated and we could therefore take her home laid on some ice and make our own arrangements as long as this was done within 4-5 days. We thought this was the best thing for her.

We decided to have her blessed by a Pastor although there wasn't a specific one for the hospital so they called one in for us. He brought with him a bunch of flowers that were send for us from the Congregation where he had held a service earlier that morning. I thought that was a really nice gesture. He lit a special candle and blessed our daughter using a small shell to put the water in that he got from his brief case. The blessing was in Dutch and for me it took away the whole personal touch as I could not understand it but I recognised The Lords Prayer at the end of the blessing and found some comfort in understanding that.

I had the epidural taken out, I was trying hard not to cry, to try and keep still. I was told as soon as I could stand and go to the toilet/shower that I could go home. In pain and barely able to walk I shuffled to the shower room, just wanting to be able to leave the hospital now and spend some time with little girl alone, at home. I nearly passed out in the shower and everything went blearly for a minute but i continued and went back to the room to get dressed. We agreed for another expert to just look at her externally, no cutting, no prodding, just a visual look at her. They took her away and returned maybe half an hour later and said they had taken a sample of her umbilical cord to test for hidden genetic problems and wondered if they could take a small tissue sample from under her arm to test further and eradicate any problems since sometimes Hydrocephalus can be caused by a genetic incompatibilty between the two parents. We agreed and she was taken off again, to return a few moments later. Meanwhile, they told us by looking over her visually they could find no other problems with her apart from her head, that otherwise she was a perfect little girl. We knew this already.... to me she would always be perfect.

The catheter in my hand from the IV drip was finally removed after waiting for an hour... the nurses were all busy with deliveries of other peoples babies. I felt we were more important. Yes, I had given birth to my baby but she wasn't alive, they would all have healthy babies so why should I have to wait to leave the hospital. We were given her birth certificate and the doctors and nurses all came to say goodbye. I asked them if they had any premature clothes I could dress her in but they didn't. I knew it was cold outside and although she wasn't alive, I didn't want her to feel "cold". They put my baby in a tiny patterned box with wrapped in her blanket. We thanked them for their help and understanding and the lovely way they had helped us through what has been the most diffucult time of our lives. I was wheeled to reception in a chair while Allan fetched the car. The nurse spoke to me about leaving, told me how hard it would be on the outside world now, how difficult it would be to deal with seeing other babies and pregnant women. I already new this but it was nice to hear her sympathetic words, to show she cared.

*Leaving the hospital and the next 24 hours*

I could barely walk, I was in so much pain. My pelvis felt like it had been crushed in a vice and I felt sick. I carried my little daughter in her box and thought how cruel the world was, I should have been carrying her out in a car seat, looking down on her feeling proud of what we had made between us. Thing is, I was still just as proud of her as I would ever be, alive or sleeping, she was ours and nobidy could ever take that away. She was just as beautiful as anyone elses child in my eyes.

I asked Allan to make a detour to Rotterdam, to the Alexandrium. There was a place outside called Toys XL or something and I wanted to find her some clothes to wear. He asked if i felt well enough to do this, I didn't but that didn't matter, she was our baby and I wanted her dressed to reflect this, i didn't care how "I" felt. We arrived and it was busy, children everywhere with buggies and prams. I tried to look away. I realised as I tried to start walking that I couldn't really. I couldn't move my hips. I made some slow steps into the shop, walking like I was handicapped. It took a while to find the Dolls section due to my slow speed but I did and Allan and I carefully selected two pink sleepsuits for her from the "Baby Born" collection. One was a fluffy fleece pink one with a hood, long sleeved and the other was a pink short sleeved sleepsuit with a hat. I also bought her some little doll nappies, as she was still leaking some Meconium from her bottom and I didn't want it to soil her clothes, ironically they were called "Baby Alive" nappies.

When i got home I carefully dressed her. It was difficult as it was easy to damage her skin but i tried the best I could. I had to trim the nappies at the bottom part so that they would fit her comfortably, they came right up to her chest but at least she would be clean and keep her dignity. The clothes were a bit too big but were the smallest we could find. She looked absolutely gorgeous and if ever there was a baby that looked just like a doll itself, it was our baby Shaylee. She looked warm now. I wrapped her in her pink fleecey blanket and held her in my arms for hours.

Afterwards, Allan collected my older daughter who had been staying with a friend throughout this ordeal. She is a strong little girl and always insisted she held and said goodbye to her sister, the sister she was so looking forward to pushing around the village. We could not deprive her of that, of saying goodbye if that is what she really wanted to do and I supported her on that decision. Allan collected her and brought her home. She walked through the door and her first words were "Oh, she's so small. Her face was ridden with grief, although she never cried as she held her little sister in her arms and kissed her head. She wanted to see her little feet, it was not easy dressing Shaylee because of her delicate skin but somehow I felt I had to show my daughter her feet as I didn't want any regrets later so I carefully undressed her like some child protecting their favourite doll and showed my daughter her little body before re-dressing her again. My daughter then went back to stay at her friends house, kissing her sister on the head before she went.

Allan arranged for someone to come to the house from a funeral place. I was in a great deal of pain, losing blood and could not even sit comfortably as my pelvis hurt so much, i guess it was from a combination of the Epidural, birth and removal of the placenta. I was in agony so I left it in his capable hands and took myself and Shaylee to bed. I placed her in her blanket carefully on the pillow next to me, not being able to take my eyes of my beautiful daughter. She looked so peaceful lying there next to me... I fell asleep.

I awoke at 3.15am, it was strange as this was the time I awoke in labour teh morning before. I looked for Allan but he was not there. Shaylee still lay there, asleep in his place. I went upstairs and he was asleep on a spare mattress. I decided not to wake him after the weekend we had all had to deal with. I sat on the edge of the bed and wept before falling asleep again.

*Monday 11th January 2010*

I woke up to Allan coming in for his work clothes... I admired his strength although i knew inside he was in pieces just like me. I knew he wasn't ready to return but he felt he had to. He told me that the person from the funeral that came to our house last night was not appropriate and that he was just talking about money, trying to push us to sign things and never even asked to see Shaylee so he promptly asked him to leave and told him this was not going to work out.

At 10.20am, my daughter and Allan walked through the door. My daughter's school had called as she felt sick. I guess the inpact on her was more than she was ready for. She briefly held her sister, kissed her and went to bed. Allan went back to work promising to check on me at lunch time but arrived again shortly afterwards to say he could not handle going into work and had explained to them that I needed him at home more than they needed him at work right now and they allowed him some time off to greave for his daughter. He set about calling some funeral places and another person will come around this evening.

I am now sitting here with my little baby girl, I am wriggled with pain and typing through bleary eyed tears but I had to write my story since I didn't want to ever forget my journey with her, from beginning to end. I will never forget my beautiful daughter and I cherish spending every moment with her right now because I know soon she will be taken away from me forever, first her soul was taken and soon her body and then I will have nothing left but memories to hold on to.

R.I.P Shaylee, we love you with all our hearts sweetheart.

Hugs and Kisses for always,

Mummy, Daddy and your big sister Savannah xxxxx


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## ~KACI~

Thinking of you and your family, thankyou for sharing Shaylee's story:hugs:

Sleep well angel xx


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## Nosy_Cow

R.I.P Shaylee 

:hugs: to mummy, daddy and big sister!


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## AP

Sammy,

Thank you for your story. I dont think I have cried ever so much reading a post. I am so sorry babe. 

You have made everything so perfect for her.

Floaty kisses from here to Shaylee, and :hugs: to you, Allan and Savannah. 

I will be thinking of you hunny

Lots of love 

Sandi and Alex xxxxxxxxxxxxxx


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## xXhayleyXx

:cry:

Have just read every word and i am totally loss for words 

RIP little angel 

x x x x x x

:hugs:


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## louise1302

RIP Shaylee 

:hugs: to mummy daddy and big sister xxx


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## FlowerFairy

RIP baby Shaylee. xxxx

:hugs::hugs::hugs: For Mummy , Daddy and Big Sister xx


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## KKSARAH

:hugs: :hugs: :hugs: RIP baby Shaylee :hugs: :hugs: :hugs:

Sammy, Shaylee will be looking down on you all from the clouds above and will be so proud of Mummy, Daddy and Big sister and knows how much she was wanted and is and always will be Loved :hugs:

Love to you all :hugs:

Sxxx
:hugs:


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## ChloesMummy

:cry: 
:hugs: Thinking of you hun, Fly high Shaylee :hugs: x


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## natasja32

RIP Shaylee...:hugs: to you all. Thinking of you and your family at this devistating time. Thankyou for sharing your story.:hugs:


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## bigbloomerz

RIP Darling Baby Shaylee, Sleep Peacefully Angel :sleep:

Sending all our Love to you all hun, You have been so strong and continue to be so, I'm so proud of you for how you are coping with all that has happened recently. 
Shaylee will always be there in your heart and mind to help you through the tough times and smile over you all at the good times.

Lots of Love xx xx :hugs xx xx


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## helen1234

:cry: i'm so so sorry hunni :(
sweet dreams Shaylee


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## Gizmo

Im sure Shaylee is in a lovely place right now ... You have written a lovely tribute to a precious little girl that will live in your heart forever...... My heart aches for you and I hope peace of mind comes to you very soon as you did all you could do as a mother.

Take care of yourself


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## MUMMYALLY08

so sorry for your loss love, you are a very strong woman for sharing your story with us, so thank you. you and your family are in my thoughts. xxx


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## pinkmummy

:hugs: hun I am so sorry for your loss :hugs: :cry: You are one amazing family!! x


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## _Vicky_

Fly high gorgeous girl - forever loved and now at peace.

So sorry I have no words only grief that you have to go through this - thinking of you all at this horrible time xxxxxxxxxxx


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## tricky nicky

thankyou very much for sharing your journey with us
thinking of you at this sad time
x


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## Drazic<3

I am so deeply sorry for your loss. Thank you for sharing the precious story of Shaylee's life with us. I feel honoured. I know soon they will take her physical body to be at peace but please never forget she will always be with you. Your angel baby girl will forever be at your families side.

Wishing you strength and peace, with love to you, Shaylee, Allan and Savannah. 

Katie -x-


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## fluffyblue

Oh darling such a sad story and you and your family are so brave. Sending you all my love thats all I can do xxxxxxxxxxxxx


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## littleblonde

That was a beautiful tribute to very clearly your beautiful daughter, you are a incredable brave women. I wish you and your family strenght and hope that one day you find some peace (sorry hope thats not an inapproprate way to say it) xx


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## Blah11

:hugs: RIP Shaylee


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## amazed

RIP baby girl... im so sorry hun... thinking of you all xxx


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## K1mberley

I cant believe what you have been through, i am thinking of you and your family and know your little girl will be at peace x


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## debjolin

RIP Shaylee.
im so sorry to you and your family for your loss


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## Justme

Sleep tight Shaylee :hugs: Sammy, thank you so much for sharing your story of your beautiful princess's life.I am sat here in tears,so moved by what you are having to go through.I wish I could take away some of your pain.
Thinking of you and your family :hugs: x x x x


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## kirsten1985

Your story made me cry so much, you are very brave, all of you. RIP baby Shaylee, I'll be thinking of you.

Kirsten xxx


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## Scally

RIP Shaylee xx Thinking of u and your family at this time x


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## dippy dee

RIP Shaylee your mommy and daddy think so much of you sleep tight precious little one.
Sammy i'm here if you need me, take your time to grieve, heal and please take care of yourself. xx


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## Izzy'smummy

Rest in peace sweet baby Shaylee.My heart goes out to you and your family :hugs:
Love Elliexx


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## firstLO

So sorry you've had to go through this, I can't even imagine the pain you must be feeling. Hopefully you will see your daughter again one day in a better place. x


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## Becky_Mummy2B

I am so very sorry... I am sobbing... Cannot imagine your pain. Thinking of you xxx


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## Carmello_01

It is an honour that you have shared your story with us, thank you. You and your family are amazing - I have never cried so much reading a post. :hugs:

Rest in peace little angel, forever beautiful!


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## Halle71

My heart is breaking for you. 
Baby Shaylee can rest in peace knowing she is loved by her family.
Please take care of yourself, you have had to put up with so much and make decisions no mummy should have to. 
Love Halide x


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## baileybram

im so very sorry for your loss xx


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## maybebaby3

thinking of you and your family at this terrible time for you all xxx


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## Augustbaby

Sending all my love at these hard times. Peace be with you and your family. x


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## ohmisslizzie

Thank you for sharing your story, I am balling my eyes out, much love to you and your family, and your sweet angel, Shaylee, she is above you now and will always be watching over her mommy daddy and sweet sister, you are so strong to be able to share that- I can not imagine the pain, bless you and your family. RIP Shaylee, sweet baby girl!


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## amy2boys

Thankyou for sharing your amazing journey with us. You have touched alot of hearts with your courage and strength throught the deepest heartache possible. You and your special baby will be remembered not just by you but by all of us... forever. 

You descriptions of your amazing little girl are exactly the same as my son born premature at 24/26wks and 690g. Thier fragile skin, tiny feet. I can totally imagine how beautiful she is.

Look up to the stars and be comforted that even though she is not here is person, her soul is forever beside you..always.

All my love to all your family
x
x
x


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## quail

im heartbroken for you ,i thank you for sharing this story and i wish you all the best for the future.rip baby girl,all my hugs & kissess.xxxxxxx


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## Kelly9

My heart is breaking for you and your family and your beautiful shaylee.


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## Sammy2009

Thank you everyone... she has received so many flowers, people have done her proud.

I would like to thank everyone who has supported us throughout this, tomorrow is only closure as far as the funeral is concerned... there will never be closure on our daughter... she will remain in our hearts and thoughts everyday of our lives and beyond.

RIP Shaylee... we all love you so very much and we cant bear to be without you xxx


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## ellie

:hugs: I am so sorry for you all and pray for strength for you :hugs:


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## krockwell

:hugs:
Thinking of you and your family hun. Your little girl is so precious, and she knows how much you, your OH and daughter love her. 

Much love to all of you during this time.


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## broody_mama

Oh darling I am so sorry for your loss, and everything you haev had to go through. At least she won't suffer and didn't suffer through any of it. My condolences to you all and we are all thinking of you at this hard time xxx


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## xpatchx

You're an amazing woman. It's not something I could go through. I don't think I'd be strong. I'd break down. Your daughter was and IS very lucky to have you as a mother.

I hope one day you can find some small way of getting over this. I know you'll never forget or "get over it" in a sense...but move past it. She'll always be there and you're allowed to grieve, but I hope the pain at least calms down a bit eventually.

Well done for your amazing story, and for letting us share in her life.

Sleep tight Shaylee x x x


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## kelly2903

im so sorry for the loss of your baby girl thank you for sharing your story with us 

sleep tight princess xxxxx hugs xxxxxxx


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## EternalRose

I have just seen this, :cry: I am so sorry for your loss, RIP Shaylee x x x


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## Naya69

what a heartbeaking story iam sobbing my heart out for you i just hope today went as well as could be xxxx


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## shocker

Im so sorry hun i cant imagine what your going through right now, my thoughts and prayers are with you and your family :cry: rip little princess Shaylee :hugs:


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## BBonBoard

:hugs:I am so sorry for what you had to go through.:hugs:


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## poppykat

I am sat here in tears as I have just read your story from start to finish. I can not imagine how terrible this time has been for you.

I am so sorry for the loss of your precious daughter. I really don't know what else to say apart from I am thinking if you and your family at this incredibly difficult time.

RIP Angel Shaylee. xx


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## SRTBaby

RIP baby Shaylee, sleep little angel.


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## LogansMama

I am so sorry for all you have had to go through. That was by far the saddest thing I have ever read. I can't imagine having to live through it like you did.


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## hannahR

God lovey, im so so sorry. Words just dont cover it. You have all my thoughts and love at this very difficult time. xxx


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## cupcake

sorry i saw this so late, i am so sorry for your loss. i am sure that your daughter is at peace and so proud of you x


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## Lu28

I'm so so sorry for your loss :hugs:


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## ellahstruts

R I P shaylee, she is above the clouds with all our baby angels, i like to think they look down on us all and their siblings xxx


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## janie0

I am so sorry for the loss of your angel. You are in my thoughts. I'm sure she watching over you and your family xo


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## Cupcake Queen

Sammy

Thinking of you and your baby girl. Your story really touched me - you honoured Shaylee as only a wonderful mother could and I'm so proud at how you handled it all. And she would be too.

:hugs:


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## lynseyology

Hi Sammy

I have just read your story from start to finish and I felt I had to write to you to express how sorry I am. We have recently had a disappointment with IVF after our treatment was stopped when I didn't respond to the drugs. I was feeling like the world has ended but your story has totally brought things into perspective for me. I admire how strong you have been and how much dignity you gave your beautiful daughter.

Sending lots of love to you and your family

Love Lynsey


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## velvetina

I too have just read your story and am moved beyond words just tears. I just can't find the words, I am so very very sorry. Bless your beautiful little girl and may she be at peace with other loved ones. With love. x x


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## Sammy2009

Lynseyology - i'm so sorry to hear of the IVF not working. I think we will go for FET soon, we have an appointment tomorrow morning with the fertility hospital. It might sound soon but when you have carried a baby for 24 weeks and its snatched away so cruelly you only think that you want that feeling, love and bond back. NOTHING will ever replace Shaylee, she was of course unique. I would like to think one day she will try and come back into this world with a better chance and healthy. Thanks for you kind words.

Cupcake Queen - Thanks hun, always a good friend. We did the ultimate for her. We got no help financially and it cost us quite a lot of money but things like that are of no significance when you lose your daughter. I would like to think we made her day so very special for her. You know the most memorable bit of the day was when we released the balloons outside... as they gathered height and sailed off they all stayed together. We watched them for several minutes just flying free. It was then i felt she left, it was almost like they were taking her. It was very emotional and even typing this makes me cry. You never think this will happen to you.... 

TO EVERYONE ELSE

Thanks so much for you kind words, its still tough but then it always will be. Some days are brighter and then other days are dark. I am just coping how i can at the moment.

Its so nice to think that people just take those few minutes to read her story or offer some support and its very much appreciated. Maybe one day I can help other people, though i hope and pray to God that nobody comes to me to tell me their child has been diagnosed with this condition. Its funny the knowledge you learn along the way in life. I know an awful lot now about Hydrocephalus now, some people (like myself before this happened) don't even know what it is... its normally something you never have to learn about. I wish that had been me but sadly it wasn't. I just hope she is at peace bless her.


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## Cupcake Queen

Let us know how appt goes - hopefully FET can happen sooner rather than later. Totally understand how you just want to get back into it. you are doing brilliantly.


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## PrayinForBaby

I just read your story on here, my heart aches for you, as I cannot even begin to imagine being in your shoes. My thoughts and prayers are definitely out with you and your family through this hard time. I'm so deeply sorry for your loss. :hugs:


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## baileykenz

i am newbie
just read your story and would just like to say my thoughts are with you and your family..
take care
emma


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## Sammy2009

baileykenz said:


> i am newbie
> just read your story and would just like to say my thoughts are with you and your family..
> take care
> emma

Thanks hun... welcome to the forum!!! :hugs:


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## Cupcake Queen

How's things Sammy?? What's the latest with you. How are you and OH and your daughter doing???


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## Sammy2009

Cupcake Queen said:


> How's things Sammy?? What's the latest with you. How are you and OH and your daughter doing???

Hi cupcake,

OK, its still hard at times and we still cry (or rather try and hold the tears back) It gets easier i suppose. We are due to collect her ashes soon and we are going to make them into jewellery so she is always with us. We have an apt on 29th March to talk about ways going forward... its a long wait. Just past OV last night so we will see the outcome of this month but with OH's sperm we al know thats not very likely!!! :nope:

I havent been on the forummuch as ive been trying to keep my mind off things with DIY (of all things!)

So whats the latest with you? Have you been through another IVF yet? :hugs::hugs:


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## Cupcake Queen

Hi Sammy

That is such a beautiful idea with the jewellery :) You have handled this whole thing with such dignity and grace and Shaylee would just be so proud. :hugs: I really admire you.

I've been laying low too - just had m/c # 3 about a fortnight ago after Cycle # 3 - so it's hard at the moment to keep going..............so just trying to focus on other things.

Thinking of you 
:hugs:


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## Sammy2009

Cupcake Queen said:


> Hi Sammy
> 
> That is such a beautiful idea with the jewellery :) You have handled this whole thing with such dignity and grace and Shaylee would just be so proud. :hugs: I really admire you.
> 
> I've been laying low too - just had m/c # 3 about a fortnight ago after Cycle # 3 - so it's hard at the moment to keep going..............so just trying to focus on other things.
> 
> Thinking of you
> :hugs:

Oh hun, im so sorry :hugs::hugs::hugs:

I didnt realise you were going through IVF again it must have been during Dec/Jan when i was giving birth/burying Shaylee. What a nightmare we are both having!!! :hugs:I hardly dare think about the FET. So scared. I would rather it not work at all than to get to 24 weeks again and it fail. I am scared of the unknown and if i do get pregnant I will be scared for 40 weeks... you just cant win really... until the baby is born and ok of course! Will you be trying again? :hugs::hugs::hugs:


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## Jenna3232

Your story breaks my heart...God bless you and your family. xoxo


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