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Old 03-20-2012, 12:29 PM   #1
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Trisomy 18.... Now what?!?

My oldest sister just got the heart break of a lifetime as her amino confirmed yesterday that her baby boy has t18. She has been trying for 10 years since her daughter was born to have another and now she feels hopeless. I can't stop crying for her and I don't quite know how to cope as she is 19 weeks and I am 29 weeks. Part of me wishes I could just take all her pain and yet there's nothing at the end of the day I can do. The doctors have all told her he wont make it. He can't survive birth. Even if she carries him to term he will get his wings shortly after. I have not heard one positive thing about this. Does anyone have or know a child who is striving today that has t18? I just want to know is there really hope out there. We find out if mine has a heart defect and will need surgery after birth on Thursday and this weeks is just feeling down. Someone out there has to have a ray of hope!

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Old 03-20-2012, 12:44 PM   #2
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Re: Trisomy 18.... Now what?!?

I so wish I had some advice or words of comfort, mama. I am so, so sorry.
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Old 03-20-2012, 12:50 PM   #3
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Re: Trisomy 18.... Now what?!?

I have heard of several babies who have lived for months after birth with t18 (and were a huge ray of sunshine to the family, even though everyone knew they wouldn't last long) but never longer than that (a year max, maybe? not even that?). I know it is super hard to know your little one isn't going to live, but I think most parents who have had a child with a chronic and fatal condition are glad for the little time they had with them.

I'm so sorry for your sister, though.
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Old 03-20-2012, 01:00 PM   #4
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Re: Trisomy 18.... Now what?!?

As PP said it is a fatal diagnosis. My niece passed away from tri 18 January 23, 2009. Her mom elected to carry to term and she lived for almost 30 hours skin to skin with mom the whole time. We had "Now I lay me down to sleep" come and take lots of photos. Julianna will never be forgotten.
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Old 03-20-2012, 01:13 PM   #5
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Re: Trisomy 18.... Now what?!?

Really ultimately what is going to determine this baby's chances of survival are the physical problems he/she has. Genetic syndromes have a wide range of conditions, even children with the same genetic syndrome can vary quite a bit. This baby could be in the small percentage that survive but the best way to know is to have a detailed u/s scan to detail all the physical conditions.

Some doctors aren't vary good at expressing how wide the variation can be in genetic syndrome some only predict middle of road probabilities while some are total doom and gloom.

I really wish more physicians would be honest and just say it can be as bad as x scenario or as good as z scenario with a majority of the population falling in the y scenario. Unfortunately the ones I have been to try to take the all knowing approach and can be widely off because there is so much variability in genetic outcomes. It is one of the reasons I have found little use for geneticists. They were horribly off the mark with my son on predictions because they gave such an incomplete picture. I made better predictions based off my online research and so did his physical therapist for that matter.

Now the hard truth, ultimately most babies with this condition die in utero or shortly after birth but some do survive. I haven't done the research but you can just google T18 survivors. I pulled up a lot of stories just with that search term. I'm sorry your family is going through so much stress.
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Old 03-20-2012, 01:14 PM   #6
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Re: Trisomy 18.... Now what?!?

This is so sweet. Please watch this video.

http://www.oprah.com/oprahshow/Remem...Balloons-Video
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Old 03-20-2012, 01:14 PM   #7
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Re: Trisomy 18.... Now what?!?

This is so sweet. Please watch this video.

http://www.oprah.com/oprahshow/Remem...Balloons-Video
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Old 03-20-2012, 01:16 PM   #8
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Re: Trisomy 18.... Now what?!?

My heart goes out to your sister!Trisomy 18 isnt compatible with life,generally.Only miracles can happen!So sorry!!
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Old 03-20-2012, 01:43 PM   #9
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Re: Trisomy 18.... Now what?!?

I had a friend whose baby was diagnosed with t18. The baby passed away in utero when she was about 5-6 months along. It was heart breaking.
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Old 03-20-2012, 02:06 PM   #10
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My son has partial trisomy 18! I found a web site trisomy18.org it's the trisomy 18 foundation they have forums where you can talk to other parents and the web site is for expecting parents, parents, parents who have lost and family members.

We have known since my son was a few days old that he had a genetic abnormality and it wasn't until last week that I actually heard the geneticists say unbalanced translocation with a partial trisomy 18. Like pp said all t18 babies are different even pt18 babies are all different my sons dr doesn't know what kind of life he will live but as of right now he's 8 months old with kidney problems, growth delay, developmental delays, he had hernia surgery at 8 weeks old and I had high fluid while I was pregnant. All of those are known issues with t18 & pt18.

I wish you and your family the strength to over come what ever god lays in your path!
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