1:12 chance of Down syndrome

[Pippa89]

Hello,
Im looking for similar stories and support.
I am currently 13 weeks pregnant with my second child. This child is ivf. My first was natural. In 2019 I gave birth to a little
boy, no health complications. I did however have a higher risk of DS with him during my 12 week screens. It came back as 1:18- this was almost 6 years ago; then age 29. The fluid measurement was normal but I had low Papp-a.
I decided to test again this pregnancy, knowing the same could happen again. Today, I had the dreaded phone call. This time 1:12. Neck measurement was 1:7 but I am 34 almost 35 this time, low Papp-a again and slightly raised hcg. I told myself that time I wouldn’t worry! They had me straight in for NIPT blood test (I had this last time and paid, it came back one in a million)
I am glad I had the test as now they will prescribe aspirin for low Papp-a and I will have more scans. I am trying to stay strong for my beautiful boy, but I’m struggling! My husband is positive, as we’ve been through this before. But I can’t shake a nagging feeling. This pregnancy has already been such a journey! I don’t know how much I’ve got in me. Does anyone have a similar story? Now the long week wait for the results

Hi Pippa,
Sorry you're going through this. I found out today that my risk is 1:11 which has absolutely floored me. This was a surprise pregnancy and I've always thought something may go wrong as I didn't take vitamins/folic acid till I found out, but still having something like this is still a surprise.
I was offered NIPT for tomorrow but trying to decide if I should change it to a CVS instead as they're apparently more accurate? Googling isn't very helpful, and I need to decide by the morning which isn't helping.
Hope your results come back soon, hopefully it'll be a few days and you'll know x

It’s terrifying! This test must cause mothers up and down the country unnecessary worry! I’m a little calmer this time, having it happened before. I’m looking at it as there is an 8% chance and 92% they’re not! It’s an emotional roller coaster. They had me straight in two hours after the phone call for the test. The tests is 99% accurate those odds are enough for me! The amnio isn’t for me, I think that will cause me more stress. The odds are both in our favour! But doesn’t make it less worrying. DS doesn’t scare me, it’s the health complications and the consequences it may have on my current child. All the stories I hear seem to then come back lower. Forums like this are positive and reassuring.
Thank you for your reply

I was a 1:35. Had a CVS at 13 weeks. I won't lie, it was horrible for a variety of reasons.
I now have a 46XX 15yo who is fabulous.

It's an awful wait for results, much love and good luck.

I think because the exact same thing happened in my last pregnancy I just don’t know if the odds will be in our favour again. I’m in two minds, the nurse did say this could be how my body handles pregnancy, and I think that the raised hcg could be that I still have got hormones in my body from the ivf meds that I’ve just stopped taking. I had low papa-a last time, and the good thing is now that when noticed they support this with their extra scans and asprin. My main ease is that the fluid on the neck is only 1.7 and there is a clear nose bone on the scan. Such a scary time, so grateful for this platform and the positive stories. Just makes me wonder if these tests need to change, the stress is unbearable for women. Very grateful for the NIPT test this time free in tv NHS that we last paid for!

@HelpMeDrRanj have you had any results back yet?
I had my test Thursday at mid day, was told 7-10
working days and my midwife called today with good new! The results came back low. Sending you lots of positive vibes 🙏

I'm so happy for you! You must be so relieved :) did they give you any figures with the NIPT or just say it was low risk?
I've been really indecisive, booked for a CVS yesterday and when I was there changed my mind to an NIPT. Had that yesterday so hopefully the results will come back quickly and be good 🤞 I'm so tired from stress now I need good news 🤞

@Pippa89 just wanted to come back and update that I got my results yesterday and am now low risk as well! So relieved ❤️ hope you're able to relax a bit more now x

That’s brilliant news ❤️

Hey.

I have been stressing so much about DS result as it came back 1 in 46. But from what I can gather fluid was normal (1.7) but my PPA was low so will need to be on aspirin. So I have booked a NIPT for Thursday hoping that it comes back low risk.

I think it may be because I’m 32 and my BMI which has given high risk result. But when I had 12 week scan they said everything looks fine so was quite surprised to get the result back

However most of the posts I’ve seen on here have had a positive result so I’m hoping all works out for me too

Glad To hear you have all had positive results!

Hi @Bee05 hope you're doing okay. I definitely think age and BMI up the risk numbers hugely, I figured that's why mine was so high too. Hopefully the fact that we've all now had low risk results shows that most of the time the risk number isn't hugely accurate and definitely doesn't mean that there'll be anything wrong with your baby. Keeping fingers crossed for you 🤞

I am okay thanks. Just trying not to stress out. I hope you’re okay too. Yess all of your low results are making me feel a lot more positive. Thank you for responding!

I’m in a similar situation and just close to losing my mind. I had the scan at 13+2 and my NT was 2.9mm. I knew this was high, but not high enough to be considered risky and sonograoher said everything is fine. Yesterday I got a call from midwife saying I have a high chance of DS of 1 to 130. I took the NIPT test yesterday, and they said it will come back in 5 working days. My median results for pap were 0.7 and hcg was 1.4 and NT was 1.6. I am so sad depressed and just struggling so much mentally. I had such an easy pregnancy first time round and now my 3 year old son keeps asking me why I keep crying. I can’t control my emotions. I feel like I’m going to lose the baby just from the stress. I feel broken

So sorry to hear you are going through this. It is such a tough wait to get the results back. when I had the screener I was worried and couldn’t stop thinking about it too. But the NIPT should put you at ease when they get back.

I hope so. I just hope it’s good news. I don’t know how I will cope if it comes back high risk. I’m mentally so exhausted already this has taken a huge toll on me.

i know it’s easier said than done because it’s the only thing on your mind. But try and think positive

Ive seen a lot of people recommend this organisation https://www.arc-uk.org for support with screening and nipt results.

I’m going to call them on Monday. Though mumsnet has been amazing. So nice to speak to all of you through this. Hoping and praying it all comes out okay

No worries. Keep your head up! Xx

Just wondered how everyone on this thread is doing? I just got a high DS on the 12 week screening and had the NIPT on Friday... waiting results now x

Mine came back low risk, also had a private scan with a consultant for extra reassurance. They told me everything is fine for now.

as hard as it is, try not to stress too much. Hopefully you would have received your results by now. Wishing you the best of luck x

Mine came back high for DS 1 in 46. But then I did the NIPT and came back low risk. It is a stressful process. All scans since have been fine.

I know it’s hard but try not stress too much.

@Amy215
Thanks so much for coming back and letting me know. I'm really happy for you and hope you're feeling more relaxed.
Haven't got my results yet. Most of the stories I see on here are of those who have ended up with low risk NIPTs or negative aminos. I wonder if this screening test is causing more harm than good with the amount of unnecessary anxiety it creates.

Thank you. Ohh definitely more relaxed. I think it does cause more harm. If anything I think only the NIPT should be had.

Just wanted to update as when I was waiting for my results I would endlessly read these threads!
My 12 week screening came back 1 in 40 for DS. I had the NIPT test and everything came back low risk. I was told from the very beginning my age (39) was probably skewing the results. For anyone going through the wait now, try and hold on to the fact that "high risk" in a lot of cases still doesn't equate to "high risk" as we would think if it. A 1 in 10 chance of DS is still a 90% it won't be. By the end of it I'd also read so much about DS that I don't wasn't scared and would have felt happy to raise a child with DS.

Glad to hear this. I definitely agree with you.