Trisomy 18

Updated on October 22, 2008
S.D. asks from APO, AE
5 answers

A friend of mine is 18 weeks pregnant and was told that her daughter may have a genetic disorder called Trisomy 18. She has had multiple tests done and they have all come out positive. Does anyone know anyone that has a child with this disorder? They have been told there is nothing that can be done. They are not military and are willing to go anywhere to get some answers. Any info would be great. Thank you!

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L.C.

answers from Stationed Overseas on

Go to Wikipedia to read more on Edwards Syndrome or Trisomy 18. http://en.wikipedia.org/wiki/Edwards_syndrome
Unfortunately, there is nothing that can be done. It is now a choice for your friends to decide if they will carry baby to term or have an abortion. There are support group out there if you google it and the hospitals (the larger ones with NICU's) usually have contacts for them. It is a sad disease because it almost always ends in the baby passing away- it is usually just a case of when. I took care of a couple with a baby who had this syndrome and helped them cope with what to expect. They carried their baby to term, or almost term- baby was born early- and they had the baby in their lives for about 3 months. I would encouraged your friends to find support groups for this as the best people to help you through it are those that have gone through it themselves. Good luck to your friends during this heart wrenching time.

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A.G.

answers from Stationed Overseas on

I just did some quick research and it looks like the screening is only 60-80% accurate. There is nothing you can do about it and as far as I've read nothing they did do to cause it. It seems that babies with trisomy 18 normally don't make it full term and at the most live up to a year mostly due to heart problems. But it also said that just like trisomy 21 (downs syndrome) it comes in many varying degrees.
My biggest advice is to PRAY. God can heal. I will be praying for them.
Søs

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V.R.

answers from Stationed Overseas on

My best friends 8th baby had Trisomy 18. Please email me so I can get you in touch with her. She loves to help others going through what she went through. It really helps to talk with someone that has personnaly gone through it.
____@____.com

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R.S.

answers from Stationed Overseas on

I don't know anything about it personally but I did find some information, and support sites. My basic understanding of reading them is that it is related to Down Syndrome, and is caused by an extra chromosome.

I'm really sorry to say that there seems to be a 50% chance of miscarriage versus carrying to term of fetuses diagnosed with Trisomy 18, and life expectancy is very low for those that are diagnosed with it. Several of the sites have areas devoted to preparing for the best and worst times in a parent's life, and I only hope they can provide some help to you and your friends.

Chromosome18 Registry and Research Society
http://www.chromosome18.org/

Support site for Trisomy 18, 13 and related disorders
http://www.trisomy.org/index.php

Trisomy 18 Foundation
http://www.trisomy18support.org/

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T.E.

answers from Stationed Overseas on

i have a friend whos baby girl was born with trisomy 18 about 13 years ago her daughter only lived a few days but they didnt know anything was wrong till she was born all ultrasounds were normal according to her Dr . They went on to have a healthy daughter a year later .

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