Hydrocephalus - Updated with: Our Birth Story on Page 14

[Nosy_Cow]

I hope today goes ok!

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

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.

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!

 

[Sammy2009]

I hope today goes ok!

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

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.

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!

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?

 

[EternalRose]

Hi ya hun

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

EternalRose xx

 

[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!

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 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.

 

[Mommy2Kian]

Thinking of you hun x

 

[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.

 

[Nosy_Cow]

 

[Tegans Mama]

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

 

[maybebaby3]

u r in my thoughts and prayers

 

[Sammy2009]

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.

 

[maybebaby3]

so sorry u r in this terrible position xxx

 

[Mommy2Kian]

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

 

[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.

 

[AP]

Best of luck honey xxx

 

[dippy dee]

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

 

[EternalRose]

Will be thinking of you tomorrow hun xx

 

[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

 

[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.

 

[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.

 

[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.