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?

 

[EternalRose]

Hi ya hun,

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

EternalRose xx

 

[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

 

[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.

 

[MrsSixx]

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

xx

 

[cupcake23]

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

 

[hannahR]

So sorry lovey. xxx

 

[amazed]

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

 

[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

 

[BBonBoard]

so sorry

 

[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

 

[AP]

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

 

[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

 

[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.

 

[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.....

 

[WW1]

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

 

[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

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

 

[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.

 

[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.

 

[Sammy2009]

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.