Tristomy 13

[Buttons2019]

Can anyone give me advice on this condition, this had showed on my 20 week scan, did there pregnancy continue to the end, and did there baby stay alive and if so how long did they live,

I'm very sorry for your news, it must be really worrying and stressful. From what I know of it, the prognosis generally isn't great but your consultant and their team should offer you further testing and information as well as counselling.

This charity will be able to provide you with information and support OP www.soft.org.uk/

As I understand it, prognoses vary greatly and you may not know the extent of your DC's disabilities until he/she is born. I know of one DC born with this condition though who is now 8 years old. She is severely disabled, both mentally and physically, but it seems there is plenty of support out there and the FB posts I see from her DM are always very positive and accompanied by lovely pictures of her DD enjoying life. I don't know how usual that is for this diagnosis, but SOFT should be able to help you.

Thank you I will have a look,

Dd1 had patau syndrome, diagnosed by amnio after markers were detected at the 20 week scan. We chose to continue with the pregnancy but she was still born at 32 weeks. My advice would be to take your time and dont accept what doctors tell you at face value

Thank you for your reply, and I'm sorry for your loss, can I ask what do you mean take your time and don't accept what doctors tell you, my baby has also a cleft lip and a possible hole in the heart, I know no one with this condition and don't know long would a child survive, can I ask was your labour long to deliver your baby

I’m sorry you have such a difficult diagnosis.
I can answer your cleft lip questions if you have any.

My experience was that doctors instantly decided that she would not live as soon as we got the diagnosis. They told us that children with patau syndrome cant survive and those that do have no quality of life. Its true that many have significant needs but it's not as clear cut as "all babies with trisomy will die or be vegetables " which is what doctors told us. There are a couple of facebook groups for families affected by trisomy - I'd really recommend those for finding out the real story of trisomy. My labour was induced a couple of days after dd died. From the start of induction to her arrival took 13 hours. Are there any other scan markers? Cleft lip and hole in the heart alone are relatively minor

Neveradullmoment, no other scan markers found they recommend I do the test for the amino fluid to determine one which it may be, the back of the brain has not formed, I will have a look at Facebook pages

@Buttons2019 I am so sorry to hear what a difficult and worrying time you are going through. I am a midwife specialising in working with women whose babies have complex issues. I would agree with PP that the info on the SOFT website is very good
It has become almost the expected thing in the UK for women to end their pregnancy if a baby is found to be affected by this condition, but this is absolutely not right for everyone. It is very important to remember that you have choices. There is lots of relevant info on here www.walkingwithyou.org.uk.
Please do message me if you want to ask anything

My friends niece has this, she's 13 now but severely disabled. She has the "milder" form so life expectancy is unknown but as disabilities go it's quite catastrophic. My heart goes out to you .

Do get the amino to get a confirmation that's it's not something else before you make any decisions, the cleft lip and heart are fixable