My boys just turned 3 and my DS Eric has VATER syndrome. He was born with only one kidney, on the right, a left radial club hand, he has a partial vertebrae in his spine that causes scoleosis and he also has bicuspid aortic valve in his heart. He also has tortacolis (sp?) and hypertonicity. He has asthma but not too bad. Relatively speaking though Eric is a pretty healthy kid. He was born with a thumb on his left hand that was attached to his hand by a skin tag so they remove it before he came home. Since he has had 2 surgeries to centralize his hand on his wrist/arm to improve range of motion and they made him a thumb by taking his pointer finger and moving it to the thumb position. He has had to have OT since he was 6 months old but last Dec tested out as he is doing that well. He has another OT still though who works on his neck/tortacolis and tight muscles. I feel very lucky that he is pretty healthy because VATER syndrome can be very bad. I have read that it is a rare disease and sometimes they do not survive very long. He runs and plays and does everything his brothers do although sometimes maybe a little differently. When his OT had said that he was special needs I was shocked because I have never really thought about him being that way. I try not to and treat him the same-never baby him by doing things for him-I always make him do it himself after helping him once or twice.
Jen
Mommy to Ryan, Eric and Kevin
June 2001 32.5 weeks
aka - The Wreckin' Crew

Jen
Mommy to Ryan, Eric and Kevin
June 2001 32.5 weeks