29 weeks/hydrocephalus

[twins33]

My twin girls were born on 9-21-12 and today we went to see them and the nurse practioner told us that our girls have hydrocephalus, she said it could mean nothing in the long term and that they are keeping an eye on it. Has anyone else been through this.

 

[Angelinheaven]

I am 28 weeks pregnant. This week we had been told that our baby girl has got excessive fluid on her brain. The fluid was discovered 2 weeks ago and was very little but in 2 weeks it has gone up very very high. Now it is 15ml on both sides of the brain. Doctors have told us that when fluid is more than 12ml, there are more chances of disabilities and complications. Our next step is to do an MRI in Queen Charlotte’s hospital (it s where they sent us). Some doctors think that there is a part of the brain missing. Will get more info from the fetal MRI. We feel so devestated as we really dont know what decisions to take. We have the following options:
1.Have an injection to help baby’s kidneys mature and then have early birth. 2.Let nature take its course.3.Termination
Is it fair for the baby to come into this world and live in HELL?
If we let nature take its course, there is a risk of a lot more complications as fluid will continue increasing and cause damage on brain.
PLEASE HELP

 

[twins33]

have they mentioned magnesium, it helps the brain develop, that is what they did to me, ask them about that and the steroids shots, also, see what the mri shows, the baby could have been in a position to where they could not see it all, honestly, I wish i could answer that question for you, me with what i believe i would choose between the first two, we have so much technology out there now it is amazing what they can do, my little ones were born at 29 wks, and they are doing great, it seems there are no health issues right now, and they are healthy and eating, and breathing really well, they were 2 and a half pounds when born, they are now up to 4 and a half pounds, keep faith and follow your heart and listen to your mind body and soul, and your baby, your wee one will let you know in some way as to what to do, I know that is hard to believe but it worked for me and they are just great, my little ones will be home soon, there is much more they can do out of the womb, oppose to in the womb. You never know what will be and what wont be, but mention the magnesium and the steroid shots and i would wait to see what the mri shows, and follow your heart and listen. Good luck with your wee one, keep me updated

 

[Angelinheaven]

have they mentioned magnesium, it helps the brain develop, that is what they did to me, ask them about that and the steroids shots, also, see what the mri shows, the baby could have been in a position to where they could not see it all, honestly, I wish i could answer that question for you, me with what i believe i would choose between the first two, we have so much technology out there now it is amazing what they can do, my little ones were born at 29 wks, and they are doing great, it seems there are no health issues right now, and they are healthy and eating, and breathing really well, they were 2 and a half pounds when born, they are now up to 4 and a half pounds, keep faith and follow your heart and listen to your mind body and soul, and your baby, your wee one will let you know in some way as to what to do, I know that is hard to believe but it worked for me and they are just great, my little ones will be home soon, there is much more they can do out of the womb, oppose to in the womb. You never know what will be and what wont be, but mention the magnesium and the steroid shots and i would wait to see what the mri shows, and follow your heart and listen. Good luck with your wee one, keep me updated

Thanks a lot. It is very hard to decide. At the moment I am living in blindness. Am very anxious to do the MRI as I don't know what will happen next. Will see when I have results. I ll check about magnesium but I took supplements during pregnancy. I ll keep you posted

 

[twins33]

please do, I will do what i can for you for support

 

[Angelinheaven]

Can someone please help me understand this report? I am so anxious and feel nervous. I need someone to talk to me. Please help me. I know that some ladies have been through this and can give me some support.


MRI Foetus

The patient is 29 weeks gestation at the time of scanning. The foetus was very active and we did not obtain ideal sequences however there is evidence of significant hydrocephalous with marked dilatation of both lateral ventricles.
The third ventricle is not prominent. The fourth ventricle and posterior fossa and cranio-cervical junction all appear normal. Atrial diameter was 23.8mms Although I cannot definitively identify the corpus callosum the morphology of the ventricles is not suggestive of callosal agenesis. There does seem to be a septum pellucidum visible anteriorly but I cannot definitively identify it more dorsally. No evidence of any mass lesion.
The brain appears immature for 29 weeks with a sulcation pattern more compatible with approximately 26-27 weeks gestation. No definite cortical abnormality although assessment was limited by the degree of foetal movement. Overall there is evidence of significant lateral ventricular dilatation. Although the third ventricle is not obviously dilated an aqueduct stenosis remains a possibility. There sulcation pattern appears immature.

 

[twins33]

Im sorry to hear that about your LO, mine were not that severe, wish I could help on that. I am keeping you in my thoughts though.zsa

 

[Angelinheaven]

please help - which is the best hospital in London for foetuses diagnosed with ventriculomegaly or hydrocephalus please? i am realllly lost!!!

 

[twins33]

I dont know, Im in the usa, you might want to try starting a new post for that, or try researching and visiting if you can hospitals in your area

 

[vermeil]

I'm sorry *gentle hugs* I know how terrifying all of the uncertainty is. I suppose the hard question is when to bring your precious one into the world, hoping they can drain the fluid and let his brain develop.

When I was 24 weeks pregnant (in 2010) they told me it wasn`t looking good. They decided to have a c section at 27 weeks because he was sooo weak and tiny. He was 2nd percentile, weighing 570g. They gave him 25% survival odds. When he did survive, they said he would definitely be heavily handicapped since he had brain bleeds. Then when he started acting normally, that he had cp (so brain damage) and might never walk.

He`s now 2.5, a whirlwind of energy and chatter and perfectly normal in every way.

 

[Angelinheaven]

your story is really encouraging. I wish there are more people sharing same stories. God bless your child! i cant understnad why doctor preach a thing and it results the other way round. Sometimes they frighten us for nothing. Consider your story as a miracle. i am hoping for a miracle too
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[vermeil]

thank you and yes you are right!! If there's one thing I learned from my son`s birth - doctors are pessimistic and always prepare you for the worst! Just something to keep in mind.

Thinking of you every day - keep us updated if you can/want