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Posted by Jill on 3/24/2005, 3:45 pm, in reply to "Daughter diagnosed with CES - Help!"
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Susan and Chris, I first want to say that I am so sorry to hear about the test results, and that I think you are great parents for wanting to educate yourselves about the situation. My daughter Hannah was born last May with CES. We had no idea until after she was born. She had an imperforated anus, TAPVR (heart), renal insuff., right eye coloboma, and ear tags. She was a beautiful little girl, perfect in our eyes. My husband and I educated ourselves as much as possible about the syndrome. We picked the brains of Hannah's surgeons, investigated on the internet, and read books. One of the sites that helped us out a lot was www.NORD.com. It is run by the National Organization of Rare Diseases. I don't know if this helps, but I have heard so many wonderful things about CHOP. All of Hannah's doctors raved about the knowledge and care that they give towards there patients. From what I have learned, and you probably already know, is that most children have zero to mild retardation, and fewer cases will have extreme retardation. We were told that soon after Hannah was to come home, she would start Early Intervention. Being a teacher, you already know, that the sooner the help, the better the situation. I'm sorry that I do not know more. I hope the website helps. Good luck, you will be in my thoughts. Just remember to give that baby all the hugs and kisses you can give, I wish everyday that I could give Hannah one more kiss.
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