Trisomy 13

[Anonymous]

Our fetus has Trisomy 13. Anyone have experience with this?

[Anonymous]

I don't have any experience with this, but I just want to send my prayers your way. I'm sorry you are facing such a difficult diagnosis.

[Anonymous]

I saw one once when I was in med school. Very very sad. I am sorry. It's like trisomy 18 - a whole world away from trisomy 21.

[Anonymous]

I have professional experience with trisomy 13 but not a personal experience. I am so sorry. I would recommend that you call the hospital where your OBGYN delivers and see if you can have a consult with a neonatologist. They specialize in the care of sick neonates. Trisomy 13, unfortunately, is a lethal problem, however, it can be reassuring to have advice and words of wisdom from different professional sources of your options for your pregnancy and your child. Again, I am so sorry and hope you are able to find answers and comfort.

[Anonymous]

So very sorry to hear your news. Wishing you the strength to get through this difficult time.

[Anonymous]

I also have professional experience with trisomy 13. I am sorry for you. It is not always fatal though as a PP mentioned, though often babies don't make it.

[Anonymous]

I'm so sorry you have to deal with this. I wanted to second the suggestion of speaking with a neonatologist. I had a very difficult pregnancy recently and it helped a lot to consult with someone who had a lot of experience dealing with very sick babies and go through the various "what if" scenarios. If you are up to it, you could also ask your doctor about support groups. I found talking to other people who had been through something similar to what I was facing useful.

[Anonymous]

My heart goes out to you. I had a good friend who also found out her baby had trisomy 13 during testing. Be prepared that some of the support groups and Internet sites also have political pro-life platforms. This really upset my friend. I second the advice about talking with a neo and a genetic counselor.

[Anonymous]

An acquaintance of mine did and although tremendously sad and challenging for them, they pulled through the experience together. Good luck and please take care of yourself.

[Anonymous]

I am so sorry to hear. When I got pregnant, my prescreening test came back with higher than normal odds for Trisomy 13 and 18. Before we got our results back from the amnio which turned out to be normal, I spent a lot of time on this website: www.essentialbaby.com It's a community like DCUM but it's Australian. There is a support group there that helped me through the waiting which is in the "Pregnancy" forum. It's called "Support Group for High Risk NT Results". You can also take a look at the "High Risk Pregnancy Group" postings. People are truly just there to help and support you. You will have to register if you want to post though.
I found lots of information on Trisomy 13 and 18 by perusing the postings.
Again, I'm really sorry that this is happening to you. It must be incredibly difficult for you and for your family.

[Anonymous]

so sorry to hear this. i got the news of triploidy a few months ago -- always fatal -- and chose to terminate. extremely difficult. counseling really helped and it did help to know others had been there before me. hope this helps you too.

[Anonymous]

Thanks for your words of encouragement and suggestions. I had not thought about contacting a neonatologist but spoke with one this morning. Really helped to put some perspective on this. Thanks again.

[Anonymous]

thinking of you and your baby

[Anonymous]

Hi, my baby was diagnosed w T13 via amnio after nuchal screening in the 12th week detected abnormalities. After much consultation with religious leaders, we chose to terminate the pregnancy. From the extent of our baby's disabilities to the length of expected life for someone with T13 and my baby's disabilities, it seemed that her existence would have been painful (instant multiple organ failure) and very short (2 days at best) had she been born. It was the idea of her suffering that made the decision for us. Although I see some support groups who point out that some T13 babies do live meaningful lives, I suspect that those babies were "mosaics", that is, had cell lines that were "normal" had helped the babies' survival. Ours, unfortunately was not a mosaic. We would have loved for her to be born and miss her all the time, but could not rightly see a baby suffer horribly if we could help it. It's a very difficult decision. I'm so sorry for you.

[Anonymous]

Hi, this is Anon from 11/18 16:36. Let me add, that we also consulted many, many doctors and genetic counselors including doctors of our own religion that were not affiliated with the hospital system treating us. We felt we needed to know everything before we could decide. Although we can't be sure we made the right decision (maybe the baby would not have suffered as much as we thought if she were to be born), I felt we did the responsible thing as parents to make a difficult decision and not dodge our responsibility.

I was bothered by the view of some of these support groups I found on the web that the baby's life or death should be in God's hands and we should let her take her chances by continuing the pregnancy. But we were reminded at some point by someone we trusted and relied on as a religious leader that sometimes God's will is carried out through human actions, too. That the fact that we learned about the baby's disabilities before birth so that we could do something about it, may be one way God is showing us his will. It is has been very, very hard. Again, I'm so sorry you are going through this.