[ Post a Response | Cat Eye Syndrome Interest Board ]
Posted by Jill Wymore
on 11/7/2005, 10:13 pm
68.77.21.41
Hi everyone, I have not written in a while b/c we have been in the hospital. Just to remind everyone, we lost Hannah in July 04 to CES. We did genetic tests and were not found to be carriers of CES so we were told that it would'nt happen again. Austin was born August 29th 2005 with Cat Eye Syndrome and the same symptoms as Hannah TAPVR, coloboma,ear/skin tags, and imperforated anus. We repaired his heart right away b/c it was obstructed, he got a brain hemmorage during surgery so he had 2 brain surgeries. He had his little behind repaired and also had 2 bronchs. Then we found out that he had chronic lung disease so we decided to put in a trach so we could finally bring him home on a ventilator. Then on Oct 27th we found out that is viens were shrinking(stenosis) and he was well into heart failure. It was too late for another surgery and we didn't want him to die in the OR, so Austin died with us holding him on the 30th of Oct. How could this have happened again? We don't carry it and have no history of it. We just want to be parents, but how can we try again after loosing 2 babies to this disease? Can anyone help?
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