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Posted by Marilyn on 2/4/2004, 6:26 pm
24.71.223.143
I have a 14 month old boy that was diagnosed with CES at about a week and a half old. We have since found out that myself and my mother have CES as well and suspect that my maternal grandmother may have had it.
My son is having his fifth, and what should be his final surgery, on Feb.17/04. He was born with an imperforate anus which required having a colostomy bag attached to him at a day and a half old. He had all of his intestines on one side of his body so they performed a malrotation at a week old. They also did an appendectomy as part of this surgery. At two weeks old he had an ASD hole repaired, a PDA vessel closed and the veins surrounding his heart (TAPVR) fixed. This past August they built him an anus and this upcoming surgery is to remove the colostomy bag.
Ryan is a happy, generally healthy boy who eats well after having a feeding tube removed at five weeks of age. He had a breathing tube removed at almost four weeks old. There are no outward signs of CES with the exception of very small ears and a small chin, however he is somewhat delayed. His gross motor skills and speech are behind and we are working with a specialist every three weeks re: this. It is too soon to get an idea of what his mental intelligence level will be but there is nothing to show any major difficulties.
I have been told that regardless of the syndrome statistically boys fare somewhat worse than girls. I would like to have another child eventually and there is a 50% chance of this baby having CES. I can find this out at about 15 weeks gestation but unless the doctors tell me my baby would not survive, I cannot see me aborting it. I am looking to speak with other parents of children with CES to get a better idea of the ranges of CES, particularly with boys.
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