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Anyone out there had tfmr (patau in our case) and gone on to have a healthy baby?

4 replies

behindtheyellowcurtain · 21/09/2016 17:15

I just need some reassurance. I have been obsessively googling since our awful diagnosis and tragically can only seem to find stories on-line from people who have faced recurrent problems. I guess I'm looking at a biased sample - you're more likely to post if you are having problems? But I would love to hear from anyone for whom this has worked out. I feel selfish and self-obsessed even asking the question, and I am so sorry if this is the wrong place to post this, I just wasn't sure where might be appropriate. Thanks in advance.

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DaniAlvez · 21/09/2016 18:34

Sorry to hear this has happened to you. It is the worst of times. I had a TFMR due to a kidney problem which resulted in bilateral cystic kidneys. No amniotic fluid so no chance of lungs developing. We have a 1:4 chance of it recurring in each pregnancy (recessive gene on both sides) The good news is we have had 2 healthy babies since. Both times we were scanned at 17 weeks to check development as there is no blood test available to check before that. Bloody stressful but so worth it in the end. I did have a long period after the TFMR where i couldn't imagine putting myself through it again but knew I would regret not having another go.
I don't know what the chances are of Patau's recurring so no help on that front. I wish you all the best for the future...it is the worst thing that's ever happened to me and I think about our DS1 every day. Big hugs x

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lemonpoppyseed · 21/09/2016 18:41

Our first child was diagnosed with T13 at the 12 week scan, and we subsequently TFMR. It took me a while to want to TTC again after our baby's diagnosis, as I was terrified it would reoccur, but we went on to have two healthy children. I was monitored quite closely for my second pregnancy, but it didn't seem to be an issue for my third. My DCs are now 5 and 2.
Good luck, and hugs to you.

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behindtheyellowcurtain · 21/09/2016 18:44

Thank you Dani, congratulations and commiserations. It truly is awful, i can't imagine how you coped with your subsequent pregnancies. I think Patau has a 1% chance of recurring, which seems high given that the original risk is something like 0.01%. I am into my forties now so can't hang around. So pleased things worked out for you.

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behindtheyellowcurtain · 21/09/2016 18:49

Thanks too lemon poppyseed and I'm sorry this happened to you too. Fantastic on your two children, that's fab. X