High Risk - Help and Reassurance

[Hoping4amiracle]

Hello,

Posted on the recurrent miscarriage thread but adding here incase there’s some ladies who have had similar experience not on that thread.

Im 37 (nearly 38) and this is my sixth pregnancy (previous 5 were miscarried). All was going well and I was starting to believe this was our miracle but we got the dreaded call today to say we are high risk for all of DA, Edwards and Patau with the only abnormal marker being Papp-a which was very low at 0.12. Has anyone had similar and a positive outcome? I’m beyond distraught right now and just can’t understand when all other markers were good and as expected xx

Hi lovely.

I had my 12 week scan in July last year and also had the screening, due to my age (38) and was an IVF pregnancy. It came back as 1/5 for downs and I had an amniocentesis which after an agonising wait came back all clear. I had my perfect daughter 2 weeks ago 🥰

I really feel for you as I know how stressful this is but try and remember 1/5 means there's an 80% chance your baby will not be affected. I was told my age alone bought it down from 1/500 to 1/140 which is a massive leap, my NT was within range but I had low Papp-A which bought it down further.

Nothing anyone can say will make you feel better but all you can do is try and stay positive (easier said than done I know). At least with a CVS you will get a definite answer.

I'm thinking of you- it's so unfair when you just want to enjoy hunt pregnancy after all the heartache, I really hope they don't keep you waiting too long for the results x

Hello,

Congratulations on the birth of your baby girl. I can imagine she is worth all the anxiety.

Thanks for responding. My risk is 1:2 and it’s such a shock. Consultant said it was a screening but then proceeded to talk about termination options and I very much feel like she didn’t give us much hope xx

Can I ask what your Papp-a result was ? I’ve not seen anything online with a result as low as 1.2 MoM x

Get an NIPT test done, it's non-invasive. Try not to panic.

Thanks, we had that done today and now we are stuck waiting a week for results 😢

I am also waiting for NIPT results and my Papp-A was exactly the same as yours, only 0.12Mom. Screening gave 1 in 7 chance of Edward’s or Patau’s. Although I tried not to I did a lot of googling. I have screenshots of a few mumsnet posts of people with around 0.15mom Papp-a who have had fine and healthy pregnancy’s. Sorry you are in the same boat as me. The wait for results is not fun. I’m hoping to get the NIPT results by Friday.

Hello @EmpressFlabulonTheWobbulous and so sorry you are in this position also. It’s just horrendous.

i hope you get good news on Friday - don’t know how I’m going to cope until Monday but I feel like the writing is on the wall. When I was talking to the consultant today she said I was ‘clutching at straws’ so feel she knows this is going to be bad news.

am I ask what your HCG result was? X

The waiting is intolerable, I'm so sorry. Keeping everything crossed for you.

My HCG was on the low side 0.47. So that’s why I am higher risk for Edward’s and patau’s rather than DS. Although still 1 in 58 for DS. My NT was normal, 1.6mm. The midwife wasn’t particularly negative with me. Just said it was a screening test and the aim of it is to identify people for further testing. Potentially she tried to encourage me towards CVS but not massively so.

My Papp A was 0.3 and NT was 1.7.

It really is the worst time but having a CVS or amniocentesis gives you a 100% result so really worth having in the long run.

The doctors always have to prepare you for the worst; but it's not over until you get your result. I have seen on here so many with high risk that comes back ok- it really is the unknown at this point.

Please keep us updated- I'll be thinking of you. Just remember, what ever the result there is nothing you can do to change anything and none of this is your fault. I spent days blaming myself and thinking it was something I had done, or it was my fault for forcing it (IVF) but honestly making a healthy baby and carrying to term is so involved- so many stars have to align and the majority of it is way out of our control x

Thank you for your kind words @CaribbeanCupcake and all.

im trying to maintain some positivity but really struggling to stop my mind going to a dark place. This was supposed to be my miracle baby after five losses and it’s becoming a nightmare x

OP the wait is awful, I know it’s impossible but try to distract yourself and not stress too much. Fingers crossed for you!

Just an update from me. Had the call about NIPT results and all have come back low risk. So even 0.12MoM PappA doesn’t mean there is necessarily something amiss. Crossing my fingers that you get a good result as well OP. I had my blood test last Wednesday so just under a week for results.

Oh wow, that’s amazing - I’m really happy for you and it does give me a little hope although I’m trying to prepare mentally for worst case scenario.

i bet it’s a massive weight off your shoulders. We’ve been told all NIPT (Scotland) come back on Mondays so it will be Monday for us to get results xx

Hey - I’m probably going off on a tangent but still trying to make sense of things, I’m sure you know what that’s like. I’m wondering if any of you who had really low Papp-a with no chromosome issue had PCOS or diabetes?

I have insulin resistant PCOS and I’m pre-diabetic … I’m reading there is a possible link between diabetes and Papp-a and insulin resistance and placenta insufficiency. I might be clutching at straws but just wondering. Xx

I don't, but mine was an IVF pregnancy and was told low Papp-a is common in IVF.

We had a loooong journey to get our baby- 3 1/2 years of trying and 1 failed round of IVF before it worked. I'm so sorry for your losses and understand how you feel about it being your miracle. Just hold onto that x

Hello,

I wanted to update my post as I know these can be such a comfort to women going through similar upset.

The result of the NIPT came back low risk for all trisomies and whilst not a diagnostic it’s a very sensitive screening test. We spoke to the consultant today and we were scanned, she didn’t see any anomalies in the scan and so based on that and the fact it was only really Papp-a that was way out, we decided not to risk an amniocentesis.

It’s a slight concern that Papp-a was so low (0.12 MoM) but we will be monitored closely, as it is the baby is measuring ahead. I am prediabetic and that can impact placental function which can have a knock on impact to Papp-a. So I will see a separate consultant on that later in the week.

Thank you ladies for the hand hold when I really needed it. I was spiralling last week!

To anyone reading this in the future and going through this stress, I am so sorry you are in this position as there is nothing worse. I hope this gives some hope as we got the lowest result the screening test can give xxx

Thanks so much for updating, I'm so happy for you 😀 No not diagnostic but I believe the NIPTS are very accurate still so hope you can take comfort in that. Do you feel better and like you're able to relax a bit now? It's good they will keep a closer eye on you and it's a good sign that there are no anomalies on the scan.

Try to enjoy the rest of your pregnancy now. You've been through such a stressful time so allow yourself to decompress, treat yourself and look forward to meeting your little bundle 🥰🥰

Also forgot to ask, did they advise you to take aspirin every night for the low Papp-a?

Thank you , I feel majorly relieved this evening and like I could go to bed and sleep for a week!

Ive been on aspirin since BFP as part of recurrent miscarriage protocol. Xx

So glad to see your update! Hope the rest of your pregnancy goes well.

@Hoping4amiracle We have very similar Papp-A scores - do you mind me asking what your other markers were? We’re in the dreaded 10WD wait for NIPT results and praying for a miracle.

Papp-A 0.13 MoM (very low)
bHCG 2.34 MoM (high)
NT was 1.2mm (normal)

Hello @MGreen13 .

We had very similar results, Papp-a was 0.12 MoM, I’m sure HCG was about 2.14 and NT was 1.8 mm. I would take heart that Nuchal translucency is normal.

Low papp-a can have other explanations - at my 20 week scan we found out the baby had IUGR and we now know that was caused by placental insufficiency. Blood flow to the baby went into reverse at 28 weeks and my little boy had to be delivered. That was two weeks ago and he is doing well in the NICU which I pray continues x

@Hoping4amiracle Thanks for responding so quickly!
And congratulations on your arrival - hope he continues to thrive 🩵
That’s reassuring - I’ve seen lots on low Papp-A so hoping it’s just a bit of a dodgy placenta and nothing else but we’ll wait and see! I know that will come with its own complications but hopefully means a fairly healthy pregnancy in the grand scheme of things! X

I was in your position a few months back and it’s agonising, I’m so sorry you find yourself in this position also.

Nobody has a crystal ball but there is just one outlier and the other results are not massively abnormal. There are quite a few conditions that can lead to placental problems - diabetes, PCOS, hyperthyroidism, anti-phospholipid syndrome etc. If you have one of these it might explain the low Papp-a x