I have a son, Keaton, who has Congenital Arrested Hydro. At 32 weeks pregnant they found his hydro during a routine ultra-sound. Shortly after birth he had an MRI and it showed that his hydro had not changed, large fluid filled ventricles with a small amount of brain. A neurosurgeon told us that he was missing vital parts of his brain and that he probably wouldn't walk or talk. However, two neurologists we took him to disagreed. They felt that all of his brain was there but it was being compressed like a sponge and so you couldn't see it all. They detected he did in fact have certain structures. They did not advocate a shunt because his body had found a way to equalize the fluid (they believe it is being leached out through his brain tissue) and if a shunt was introduced, his brain might collapse.

My son continued to progress normally. He walked at one year, rode a bicycle at 4 and excelled in elementary school up until the 2nd grade. I thought I was the luckiest person in the world that he showed no signs (and I still realize I am luckier then most). However in third grade I began to see signs in his testing and processing abilities. His teacher gave up on him and stated to my husband and I that he was a "below average student who was working to his best abilities" and that we should not expect him to be a good student or go to college.

Of course those are fighting words to us moms!!!! so we had him tested through a well known psychologist. She found that he does NOT have a low IQ, but does in fact have have cognitive visual problems (what his brain see's is different than what is there) so what the teacher puts on the board he cannot recreate it on his paper. And slow information processing (the connections in his brain are slower to get to the end result), you give him a timed test and an un-timed one he will do much better on the second. She believes this is directly connected to damage received from the hydro. She thinks it is surprising that he is doing so well in school (he is in the 70% and she thinks he will be much better if we can get him more time in testing situations) and that he is accommodating well for his deficits. However, she worries that as the academic work gets harder he will struggle more and more.

After searching the internet I realize I am in a unique situation in that I can't find many children with "arrested" hydro. Partly I think because they are not detected because they show no obvious hydro signs. However I am hoping that other hydro children will have the same symptoms even though their hydro has been equalized. Can anyone tell me if they or their children have these issues? And what works or doesn't work?

Thank you