My new granddaughter, does anyone know about fluid on the brain?
July 22, 2008 6:00pm CST
This morning my first grandchild entered the world. During the pregnancy an ultra sound found fluid buildup on the brain. We were told it was massive amounts, she only had a 50-50 chance of surviving the birth, then only a 20% chance of not being severly handicapped. The plan was for her to be delivered by c-section and immediately taken to surgery to put in a shunt to drain the fluid. The truth is we all kind of had this space alien image of her. Now she's here with only a very minimal build up of fluid on the brain and it's draining, slowly but draining, and they have decided not to put in the shunt. They are going to monitor the draining for a couple days but right now they believe she is correcting herself. So now after 5 months on pins and needles I'm wondering if anyone knows can I relax now? Does anyone have any experience with this kind of child? I realize only time will tell if she is going to be challenged, and to what degree, but once this fluid drains will it stay gone or could it come back? My daughter and granddaughter live almost 900 miles away so I can't be there to talk to the doctors and the people that are there haven't been doing to good at getting answers to my questions.
2 people like this
22 Jul 08
Hydrocephalus is not as dangerous as it used to be. In the '60s most children with this condition were stillborn or did not survive. I'm surprised they didn't insert the shunt because that's the procedure of choice in these cases to prevent a buildup of pressure which will impede brain development. My wife was born missing 20% of her brain. Fortunately, it was only the visual cortex and some of the motor area. The doctors tried to convince her parents to have her institutionalized. They didn't and she is a fully functioning person today. She has visual challenges (legally blind, but can see enough to read a computer screen). She's a published author. She has terrible balance and difficulty walking more than about 100 yards. I wouldn't worry unnecessarily about your granddaughter. I'm sure she'll overcome whatever challenges life throws at her.
• United States
23 Jul 08
Thank you so much for the hope and inspiration. The shunt has not been ruled out they are going to monitor the fluid by ultra sound every two weeks and if it increases they will put in the shunt, since she is draining it they want to see how she will do on her own first. They can't repair the birth defect but are already making arrangements for early intervention to give her the best chance at a normal life. I do know about childdren beating the odds, I have a 14 year old that was not supposed to live to see her first birthday, and they tried to get me to institutionalize her as well. Nothing like a mothers love to beat the odds.
23 Jul 08
I knew a baby born with fluid on the brain... my cousins son - they drained the fuid at birth and she (my cousin) was told that he would never walk, talk, etc basically said he would be very handicapped etc... But he learnt to do it all, he walked, talked, did everything a normal child would do.... he surely was a real inspiration, one of the most cheekiest, cutest little boys! The fluid NEVER came back! It just goes to show that the doctors are not always right with what they say - because as I said my cousins son did EVREYTHING they said he would never be able to do! I really hope this helps you a bit as I have seen it all happen and hope that this is all the same case for your beautiful new grand daughter :) Take Care :)
23 Jul 08
That is awful to hear about your daughter and the first years of her life! I am glad that things are well now for her. And I can only say I hope things go well for your new grand daughter :) I am sure that it will just knowing and seeing it happen to another child myself I can only tell you about that and offer hope that this will also be the case for you grand child.