Hydrocephalus - Updated with: Our Birth Story on Page 14

[Blah11]

Glad you got no bad news

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!

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]

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

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.

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!!!

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!

 

[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.

 

[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]

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!

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

 

[Sammy2009]

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!

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!!! I will continue to say a little prayer each night for you hun xx

 

[Sammy2009]

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?

 

[Sammy2009]

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!!! I will continue to say a little prayer each night for you hun 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

 

[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 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]

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.

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....

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.

 

[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 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 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! 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!!!! "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!

 

[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 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! 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!!!! "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!

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 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 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 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! 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!!!! "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!

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 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.

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

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.

 

[Tegans Mama]

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

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.

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]

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

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.

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.

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!!!

 

[Tegans Mama]

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

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.

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.

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!!!

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