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Papp-a / T16 / worries re growth

(4 Posts)
Jinx13 Mon 23-Jan-17 09:51:32

I've never posted on here but I'm pregnant with my 2nd child. Previous pregnancy was uneventful other than SPD. After my 12 week scan, NT measurements were great, hcg normal but papp-a was 0.09 mega low.
After a hellish 10 days cvs results were clear for downs / Edwards / Patau which was a relief.
However, there was evidence of trisomy 16 in placenta and now I'm waiting to have amnio this Friday or next.
It seems to me that it's lose-lose as my placenta is clearly functioning very poorly, although it has got the baby to 14 weeks. Fetal medicine assure me they will monitor me, baby and placenta regularly but if I'm honest, I'm not hopeful. I feel as though I'm waiting for it all to go wrong.
I don't know if I'm looking for reassurance or what but I'm going out my mind!! Thanks

eastegg Mon 23-Jan-17 10:15:59

I'm so sorry about you're cvs result, I'm afraid I can only offer hand holding and not much reassurance as I don't know anything about T16.

I had low Papp A as well, and like you got the all clear for for Downs, Edwards and Patau only to be told on the full result that there was another problem, in my case a 'ring' chromosome. We were advised to have amino to check whether it was just in the placenta, and had that scheduled for a few days later. Then the next day I had a routine scan and they found my baby had died, that was at 16 weeks.

That's not helpful I know, but I wanted to say I've been there and know how you must be feeling. I really hope the amnio gives you some answers, as I say in my case they talked about the possibility of the problem just being in the placenta, but I never got as far as finding out what that meant. When I got my low Papp A result I found the Internet full of stories of low Papp A that had turned out fine, but I appreciate your cvs result must be horrendously worrying for you.

I wish you all the best and hope the amnio comes sooner rather than later. Are you having to wait because you're not far enough on yet? Seems a long time to wait otherwise.

Millymolliemandy Mon 23-Jan-17 10:44:51

I just wanted to add a good news story. I had a similar PAPP A result in my first pregnancy (a bit lower if I remember right) and went on to get the all clear from a CVS. I was wanted it could indicate potential issues with placental function/growth and was then referred to Fetal Medicine who were excellent, so hopefully you are in the best possible hands. There was an issue at 20 weeks when the baby was at the bottom/off the gentile charts so was scanned weekly and given steroid injections etc and managed to limp on until 31 weeks. I won't lie it was a very stressful time but the medical care could not have been better. Anyway DD was delivered weighing 2lbs - followed by a bit of a rollercoaster of a time in NICU/neonatal and is now a slightly petite but very feisty and perfect six year old.

I fell pregnant very quickly after DD, again PAPP A was very low (about 0.3) was under Fetal Medicine but all was fine and DS was born weighing 7lbs 3.

Am now on my third pregnancy - 20 weeks, PAPP A was again 0.3, had the Harmony test which came back low risk but again under Fetal Medicine, have my 20 week scan on Thurs and then regular scans from 24 weeks to check placental function and growth.

I completely understand what a stressful and awful time, and can't add any experience in terms of any chromosomal issues, but can tell you that I was told low PAPP A does not have to mean issues, and am keeping everything firmly crossed that current pregnancy will be ok.

Hope you get the amnio as soon as possible the worst thing is worrying and waiting.

Jinx13 Mon 23-Jan-17 17:14:15

I'm really grateful for your replies. It seems such a huge variation of outcomes and of course they don't affect your own, it helps to hear all sides. I feel total dread all the time that I'm waiting for my baby to die. Scans show a growing baby but km only 14 weeks.
Had cvs in the hope it gave us answers but yeah have to wait til 15 weeks for amnio. There's a possibility it's still too early in which case will have to wait another week.
No-one seems to know much about trisomy 16, it appears babies with the full condition miscarry in the 1st trimester. So it's possible either it is confined to placenta or baby has mosaic form. The team have never seen it before and I will need referring to genetic counselling. Would all be very interesting if it wasn't happening to me!!
Fetal medicine have been wonderful too, and they do reassure me that they will watch me like a hawk. I love the term 'limp along'. I just hope we get to a point where we can do that.
Thanks for responding. So grateful

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