
Posted by Therese on 4/3/2006, 8:50 pm, in reply to "labratory info" Hello,
71.101.243.117
Hello, I read your posting regarding having had more than one child with CES..I am so sorry. We lost a little girl in November but I truly don't think I would have the courage to go through it again. I am sharing my story attached. I am trying to find out more information since neither my husband or I carry the marker. I was wondering if you found out anything more?
I currently reside in Florida. In October of last year we had a little girl Dagen who was born with Cat Eye Syndrome. She had a severe left side diphragmatic hernia with very little lung development. She only lived three weeks.
We miss her a great deal as well as the dream of having her in our lives. She was our second child. We have a two year old perfectly healthy son.
Her hernia was diagnosed at my first ultrasound when I was 17 weeks. Additionally, the extra genetic material on the 22nd chromosome was detected from the amnio so both my husband and I were genetically tested for the additional genetic material. From these results we were told that neither my husband or I carried the genetic marker and that is happened spontaneously when her chromosone pairs were formed.
We have since been in contact with the same genetic counselor trying to find out more specific information regarding what our situation is IF we decide we want to try to have another child. She has indicated that no studies exist following families in these regard. Therefore, I am contacting each of you via this site to see if you can help us find any additional information or contacts. Can we have any additional tests that could help us determine what our chances are of again having a child with this disorder. Can our sperm and eggs be analyzed? Can our son's DNA be analyzed? Are there parents that have gone on to have more children after having a child with Cat Eye Syndrome?
We appreciate your time in reading and responding to this email.
Regards.
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