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?

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/PageServer?pagename=parents_caring

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.

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.

ronald mcdonald house

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.

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.

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.

I would like to know what your childrens problems are specifically. My baby has 8 things wrong with it and we are conflicted with either terminating the pregnancy or keeping it. I feel like if she had less problems i could see myself more likely to keep her which i want to do but she wont last long at all they say. i hope you all will feel comfortable with telling me it will help me to make my decision. glad that your babies are a live and doing okay. thanks!!!

Irnsbrg, Kristie is still hanging in there. She will be 9 months the 25th of March, but looks like a 3 month old. She has had breathing difficulties due to colds. She is still on oxygen. The major thing right now is her eating. She was born with her stomach hooked up to her lungs and her esophogus Just ended like a pouch. They have corrected that but she still can't feed proberly. She has a feeding tub on her stomach. She also has a hole in her heart but a lot of babies do. She is aleart but not like most babies. I myself could never terminate. God will never give you anything you cannont handle. The Docs only gave her 9 months, well that will be next week, if it happens then I would have had 9 months with a wonderful child. Some Trisomy 18 babies have lived to be in there teens. You may only hold your precious child for a few minutes or you might have him/her for several days or months. No one ever knows. Best thing I can tell you is to pray. You will make the right decission for you that no one else can. God Bless!

Happy update, Kristy will be a year old tomorrow, 6/25/2010. God is great. She is doing very well and at a healthy 20lbs and 3oz. Every day is a gift of a living angel!

eeyore, wow!! Happy Birthday baby girl. What a great story of not giving up and looking into the future and not just assuming that these babies can't bring joy to this earth. May God continue to Bless this baby and the whole family.

Any update on baby Kristy? Thanks!

It sadness me that Drs still try and convince parents all these kids die and that families get led to the wromg suport groups full ofmdoom and gloom as well. Medical books have not been updated since the 60's... My son kayden is 11 years old and has full trisomy 18. I invite you to our face book suport group where you will find families walking on all sides of this journey,, these kids can live,learn,thrive receive and give love..kayden signs mom and dad even. he is perfect and Drs dont tell you these kids canlive with interventions.. He is happy and loving life..
http://www.facebook.com/groups/trisomyfamilies/
Also here is kaydens YouTube http://www.youtube.com/watch?v=1x-vdUyULJM&feature=youtube_gdata_player