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Help me stay sane while waiting for NIFTY result..?

8 replies

AdorableMisfit · 28/07/2017 09:06

I'm 38 and 15 weeks pregnant with second much wanted child. I have a DD age 7, and have had two miscarriages between having her and this pregnancy.

Following our 12 week scan at what turned out to be 13+6 the week before last, I had a phone call on Monday from the hospital saying my results have come back as high risk for Downs, 1 in 77.

They told me the result was due to low PAPP-A levels - 0.69 MoM. HCG was 1.72 MoM which is maybe a little high but they said it was OK, and NT measurement was 2.8, which they said was slightly high but not abnormal as anything under 3 is OK. I asked the midwife if anything other than a chromosomal abnormality could be causing the low PAPP-A result, but she didn't know. I'm a bit overweight (BMI 27) and have polycystic ovaries - could that affect things?

Hospital offered me an amnio, but I declined due to the risk of miscarriage and have instead opted for the NIFTY test at a private clinic as it's not available on the NHS where I live. I had the test and and another scan yesterday - baby looked fine but they said femur length is 1 week behind, but that this is not necessarily an indication of a problem at this stage (but of course I'm now freaking out about it).

They said the blood tests can take up to 14 days to come back from Hong Kong, but that they usually get them in 7... so please, help me get through to next Friday (or whenever the results come back) without going completely crazy with worry? I haven't had a decent night's sleep since Monday, I am having headaches every day from the stress. Can anyone help reassure me and calm me down while I wait?!

Has anyone had similar blood test results/NT measurement as mine and baby turned out OK? Did anyone's baby have a short femur but this turned out not to be a problem?

Also, I've read that low PAPP-A can indicate problems with the placenta... Do you think it would be advisable to take low-dose aspirin to try to help this? I've heard of people being prescribed it, but wasn't sure if it would be unwise to take it if not prescribed?

Thanks for reading!

OP posts:
Jessybear90 · 28/07/2017 21:31

Hi OP,

I recently had 1:85 change of trisomy 21 (Downs) and had a private NIPT which I had to wait seven days for which was the worst week of my life.

My scan was fine, NT measurement was fine but my bloods skewed things

My Papp-A was 0.43 and my HCG was 3.9! So both were way off.

Thankfully we came back with the all clear so I'm going be positive here and say that you will too.

Reason being is that my bloods were worse than yours but everything is fine. I'm guessing that you got a higher risk than me is because you are over 35, other than that I can't see a reason for you to get a higher risk result with mine.

Since the all clear I've asked doctors and midwives what my dodgy bloods actually mean andtje bottom line seemed to be: I was fine, baby is fine, so they don't know and don't actually care. It's just one of those strange things.

Have you had any bleeding during this pregnancy? I've heard that can skew the bloods result.

With regards to the wait, I know it feels like hell on earth but get yourself out and stay in your rountine. Don't hide away at home it will make you feel more down.

I feel positive for you that it's going to be all clear so just hang in there Flowers

Smurfsrock · 29/07/2017 03:20

Your papp-a is perfectly normal, low is considered under 0.4 so you font have that worry. Your DS risk is still better than average for your age. My last pregnancy NT was 2.8mm, Papp -a 0.7mmol and hcg 1.2 so not too dissimilar to yours but as I was 30 I got a risk of 1:1000. My papp-a this time is only 0.32mmol so v low.

Jessybear90 · 29/07/2017 08:10

Also, if you are mathematically inclined, look at it this way: 1 in 77 converts to 1.29 as a percentage, that's means that there is a 98.7% chance that everything is going to be ok Smile

Bloods being off can mean so many different things (in my case it mean nothing, just that I wasn't in the "normal" range).

Remember that the NHS screening is only 85% accurate anyway and all this info is dumped into a computer and uses an algorythm based on data and figures.

You've done the best thing by having he NIPT. Not sure about the one you have had but we had Iona and that is classed as 99.7% accuracy rate screening so it's much more reliable x

TrainedGiant · 29/07/2017 08:14

In my last pregnancy I had a nuchal measurement of 3mm and low Papp A. I want given a 1:10 chance of Downs Syndrome. I had NIFTY, lived the awful wait you are living, and got the all clear. Baby is now three and totally fine.

Good luck OP.

AdorableMisfit · 29/07/2017 15:54

@Jessybear Thank you so much for your sensible and reassuring posts. 1.29% really isn't that much. Yes, I have had some bleeding in this pregnancy, I bled on and off from about 5 weeks to about 9 weeks, they didn't find any reason for it. Do you think they could have affected the bloods even though it had stopped weeks before they were taken?

@Smurfs Thank you for replying. The hospital told me that 0.69 was low, I wonder why they would make a fuss about it if anything over 0.4 is ok? Have you been advised to have further testing due to your papp-a level this time? Also I thought the average risk for age 38 was about 1:110, I read that on some website... But obviously everything on the internet isn't true, lol.

@Trained Thank you so much for sharing your experience. How long did your NIFTY result take to come back?

OP posts:
Iwillbemrsminty · 30/07/2017 07:25

Similar story to Giant. I have twins, my twin 2 had an nt of 6.1mm. Extremely high which when combined with my bloods equalled a risk of 1:14 for that twin. Twin 1 on the other hand risk was 1:28,000. Had NIPT and a later amnio for other reasons and the horrific wait for the results both times was truly the most awful few days. Results came back all negative Andy babies are now almost 7 months and there's nothing wrong with either of them. Sometimes it can be just one of those things. Stay positive OP. Flowers

Jessybear90 · 30/07/2017 14:51

Every hospital is different, when did yuh have your bloods taken? I had mine strictly taken at ten weeks. I have read more than once that yes bleeding can effect the bloods.

When I got to my scan I was so sure on my dates because I have regular cycles every 24 days like clockwork since 14 years old including all through taking the pill so I was shocked when they told me I was wrong and was a whole week in front.

This would mean that I had a bleed (a big, long bleed) during very early pregnancy which I assumed was a "period".

1 in 77 is still an "odds in your favour" kind of situation.

Think about it, if you were in a casino and and you had to bet a months wages and there would only be a 1 in 77 chance that you would lose would you do it? I know I certainly would because the odds are very much in your favour.

Just focus on keeping yourself sane during the wait that's the most important thing.

My problem is that OH would have wanted to terminate and I wouldn't so for a week I was playing in my head having to choose between him and the baby and it we killing me. I did decide between myself (and only myself) that if it was positive I would have ultimately chosen the baby over him but thankfully it never came to that.

I have nothing against termination by the way it's just not something I could personally do.

Talk through your options with your partner and how you both would feel following a positive result and a negative result. Flowers

AdorableMisfit · 04/08/2017 18:24

Hi everyone!

Sorry for disappearing from the thread for a few days, I needed some head space. I really appreciate the support you've all given me, thank you so much.

I had a call from the clinic today, the results came back in only six days, and thankfully they've come back all clear! I am so relieved and happy.

We've also found out that we're having a boy! :)

Thanks again all of you for listening to me last week and helping me be a bit more rational about it all.

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