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For children with hydrocephalus outside of the U.S, what is the possible outcome for children with a sVP shunt which is 3 years old? ALso, for children who are unable to walk with hydrocephaly, are they immobile for life?
DeborahM2B
For children with hydrocephalus outside of the U.S, what is the possible outcome for children with a sVP shunt which is 3 years old? ALso, for children who are unable to walk with hydrocephaly, are they immobile for life?
I don't know a ton about the exact answers you are asking. I'm not sure anyone will. It would be such an individual thing. It all depends on the damage to the brain and the reasons for the immobility.
My brother-in-law was born with Hydrocephalus. Mom was told that there was a 50/50 chance that he would die at birth. If he lived, there was no way he would live past 7. He would probably never walk or talk or ...
He lived. He was very delayed in all of his landmarks, mostly because he had this tiny little infant body and a huge heavy head. But he eventually rolled over and walked and such. He eventually worked his way through school and graduated with only 1 extra year of high school. He is married and is a father now. I'm not going to say he is normal. He is mentally delayed and socially awkward. But he did find his perfect match and is leading his life.
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Hydrocephalus affects everyone differently. My 2 year old has hydrocephalus and he is meeting all of his landmarks on schedule and or ahead of schedule. He is extremely smart and his communication skills are a year ahead. I just wanted to share that with you because there is hope, but it affects everyone differently so there is really no way to say how it affects this little one. With that being said, my son has had multiple surgeries due to shunt malfunction, its a scary few days, but not as scary as it may sound, you just need to be informed and watch for it. As far as the immobility I have to wonder if there is an unrelated issue. My little guy also has spina bifida which is why he doesnt walk, Im not an expert but from our situation I dont see hydrocephalus causing an inability to walk so I dont know what to tell you with that except that with a loving family and lots of therapy miracles can and do happen. If you move forward with this little one it is important that you accept him as if he will never walk and then give him every opportunity to reach his potential. My little guy does everything any other 2 year old does, he just does it differently. Good luck! I guess the short answer is listen to your gut on this. :) Let us know how things go. Enjoy the journey.
Hydrocephalous and not walking usually mean something different than just hydrocephalous. A lot of times that combo comes with Spinabifida. Some people's shunts last a decade. Some need them changed yearly. It seems to be a luck of the draw thing rather than any particular surgeon skill level. The severity of the effects from hydrocephalous depends largely on how close in time to the actual hydrocephalous the shunt was put in the first time. You could expect almost no effect if it iwas caught early and severe effects if it went on for a long time without treatment.
Are we all talking about the same thing? It sounds like folks are using the terms HYDRANENCEPHALY and HYDROCEPHALUS interchangeably. From what I understand, they are not the same condition.
From what I know so far, HYDRANENCEPHALY has the poorer prognosis, with children typically "looking different" (larger head, etc.) and unlikely to live past childhood. Also, they are developmentally delayed. Where key parts of the brain should be in these children, there is fluid. HYDRANENCEPHALY is also very rare, about one in 10,000 births.
HYDROCEPHALUS has the better prognosis, with some children of even above average intelligence (though developmental delay is certainly possible, too). Life span is fairly normal. This condition is also referred to as "water on the brain". The brain is not replaced by fluid, as it is in hydranencephaly. But there are problems with having excess fluid around the brain, and a shunt is often indicated. HYDROCEPHALUS is more common.
So what was the question? ;)