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Parents whose child has/had Trisomy 18?

I've searched the boards and I haven't found anyone who may have a child currently or has had a child who had Trisomy 18.

I had an emergency c-section about 2 weeks ago and my child was tested and has full Trisomy 18. She also has a VSD. She was early, born at 33 weeks 6 days. The doctors have let me know that babies with Trisomy 18 usually don't live past 1-2 months, and usually die in the first year of life. With that said, I am mainly looking for support from other parents who are currently or have dealt with this in their family. 

It just seems that the doctors want my husband and I to take our baby home, just to die. I just can't look in her tiny face and accept that, but I cannot fix her and the doctors can't either. So if there are parents out there who have been here emotionally you can contact me with recommendations on how to cope at anytime. 

Thanks

Re: Parents whose child has/had Trisomy 18?

  • I have no experience with Trisomy 18 but I remember this you tube video circulating in the past about a little boy who had it.  I don't know if you've seen it or not.


  • Hang in there, I might be able to connect you with someone... just need to get permission to share info...
  • Ok, my friend who had a nephew with T18 said this: 

    my sister-in-law LOVED the boards on babycenter.com related to fatal diagnosis (i think--i haven't gone over there so i am not sure exactly what the boards are titled) -- she "met" a few friends on there and even found one in san diego near her that she has gotten together with in person.


    also, here is a blog post i wrote in which i linked to a few (general) resources that my sister-in-law shared with me. 

    http://thesutherbaums.blogspot.com/2...ew-nephew.html
  • I'd recommend this site www.livingwithtrisomy.org.  I don't have a child with Trisomy 18, but we were told our daughter might have Trisomy 13 while I was pregnant and after she was born they suspected an issue related to chromosome 18 so we did some research.  Unfortunately, you are in the minority having given birth to a baby with Trisomy 18 so it may be difficult to find a support group, but please keep looking.  Definitely try the babycenter boards and search the web - you will find somewhere you can go for help!  You might also try your hospital for references.  A friend was able to find a support group through the hospital where her son was delivered/treated when her son passed away as a result of lissencephaly.  Best wishes to you and your family. 
  • Thanks everyone for the suggestions and website info. I know this is rare but seems everyone has been touched by T-18 through family members and others. This was more information than I had and its also nice to see there are survivors out there. Thanks
  • You may have already found this, but there is a website, www.trisomy18.org with lots of support resources.
  • Congratulations on your daighter's birth - she must be some kind of fighter. What a strong little girl to have so many obstacles and here she is.  There's another woman on the boards CoolTeacher (I think) who has this blog about her son who had a poor prenatal diagnosis.  She wrote her son Isaac daily letters and shared them in her blog: http://mydearisaac.blogspot.com/

    Isaac's life was important and mattered and made a big impact on the lives of many other people. She now keeps this blog: http://sgirl79.blogspot.com/ and invites people to contact her.

    Prayers are with you as you travel this path. 

  • I know a Christian organization for families with a life threatening diagnosis. Their website has tons of stories of children with trisomy 18, including some families who have children who have lived longer than the one year prognosis. It is called Perinatal Partners for Life. They can help you get in contact with other families in similar situations.
  • While Trisomy 18 is not the ideal diagnosis, many people do go on to live and thrive. Our daughter has another chromosome 18 abnormality (18q-) and we have found a lot of support on www.chromosome18.org.
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