What is Trisomy 18 Edwards Syndrome
Trisomy 18 or Edwards Syndrome (named after John H. Edwards who first described the syndrome in 1960) is a genetic disorder. It is the second most common trisomy after Down Synd...
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My God Daughter has Trisomy 18.
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The parents are in denial and can't wait for their baby to come home. I've been reading up on this Syndrome as much as I can. They don't understand what the doctors are telling them. They think the doctors don't want to treat her and let her die. We can't give up on this little one, but we have to be realistic that she might not make it. Reading some of these entries have made me feel better that babies do actually get to go home with this.
Posted on 07/08/09, 11:07 am |
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Update... The doctors have given her 9 months to live. The mother is starting to face it and wants to tell the family. The dad, on the other hand, doesn't want anyone to know. Mom says she needs all the help she can get. They don't have a dependable car or the funds to be running back and forth. It is about a 2 and a half hour trip to the hospital. We've helped all we can. Does anyone know of a group or foundation that can help them? 
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Greetings - I'm sorry to hear about this situation. My wife and I have a baby in the NICU now. They are doing genetic testing for Trisomy 18, amongst other things and we won't know until next week. In any case, to answer your question I had come across these resources for assistance (social security, grants, advice on health insurance coverage, etc):
http://www.trisomy18.org/site/Page... You do have to be logged into the site (but it's free to join). I myself have not gone about looking for assistance so I can't speak for how good the info is. If, however, Joanna tests come back as positive for Trisomy 18 that is probably one of the first places I will go.
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Update...Kristy is doing well. She is putting on weight. They have not started feeding her through her feeding tube yet. They are waiting on her to put on some more weight then they will finish the surgery and connect the stomach properly so she can take a bottle. The dad has been sent out of town to work, and he took their car. The mom doesn't have a way to get down to see her daughter now. I don't know what to do for them. I have to work and I need my car, but I also want to help. I wish there was some way I could help more than what I have but I don't know what to do.
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ronald mcdonald house
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The second surgery went well last weight was 5 lbs 11 ozs. She should be coming home soon. She still has a drainage tube and her feeding tube. She is active and looking around. I guess that's a good sign. Mom finally got a room at the Ronald Mcdonald house and gets to see her everyday. Just looking foward for her to come home so everyone can show her how much she is loved. Prayer has really helped.
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I can understand not wanting to accept what is going on and face it, but eventually the realization will surface.
Have you been to trisomy18.org? There are a lot of resources and links on the website. My daughter was born with Trisomy 18. It was heart wrenching, but she was such a little warrior. She left this earth and joined her brother on Oct. 30 2009, after 89 days of life. As sad as my journey of losing all my children has been, I never regret having them. I wouldn't trade having had them for not going through the pain. They were real gifts to me.
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Kristie is 4 months old now. She is still on oxygen and feeding tube. She weighs 5 lbs. 14 ozs. They have home health care coming in every other day to check on her and give her a bath.
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