1:13 Trisomy 21 combined screening

[ROMM1]

Hi,
This is my first post, and hoping someone sees and can share any experiences or advice on genetic screening.
Im 14 weeks pregnant after IVF and have been told I’m at high risk and 1:13 of trisomy21
I was devastated yesterday and it felt like such a blow after such a long journey to pregnancy.
I’ve met with the nurse and she assured my results aren’t concerning for her, but thinks my age, ivf status and higher hcg could have pulled in the risk factor for t21.

My Papp-A was 0.56
hcg 5.39 mom
nt 2

I’ve just sent off bloods for a nipt test and will take a week to come back. nothing has been detected on our scan, but I’m so worried. I just feel like a seed of doubt has been planted, and I feel so thrown and can’t get the worry and doubt out my mind.

Has anyone else had any similar experiences and can share outcomes? Or even what you did to stay sane in the waiting time? My mind keeps going back to what could be wrong and would appreciated any advice. Thank you!

Hi there! I am also pregnant via ivf, and returned a high risk result for T21 (on quad test at 15 weeks rather than combined test at 12 weeks - baby wouldn’t get in the right position on 12 week scan!)

My result was 1 in 83. After crying and thinking the worst for two solid days, I did what we all know you shouldnt and scrolled through google, looking for every story possible on this topic. I then realised that these tests really are only a screening tool and in a vast majority of cases, the NIPT comes back low risk.

I also found some research that suggests that the ivf hormones may have caused the hormones they test to be elevated / too low. I don’t know if this is accurate or not, but it certainly made me feel a little better.

The NIPT came back low for all 3 trisomy’s. Was a long 6 days.

To be frank, I do not understand (other than cost!!) why the nhs are still using these screening tests when they could use NIPT. So much unnecessary stress and worry.

fingers crossed for you.

Thank you so much! I’m so glad it turned out ok for you, but agree.. what an awful thing to go through. I wish they just did the nipt. I feel a little better after speaking with the nurse so explained it’s based off an algorithm. She did say my age (37) and ivf status with a higher hcg would have increased the score, but she didn’t think my results suggested anything out the ordinary. So good to hear some feedback though, just counting down the days to hear back 🙏🏼xx

Hi @ROMM1 just wondering if you had any update on your results? I’m in a similar position now with high hgcb so really stressing

Hi lovely,
sorry to hear that, so stressful going through this. Mine came back low risk with 99.99% accuracy and my 21 week scan was perfectly normal and as it should be. I hope this gives some reassurance, and I know it’s easy to say but try not to worry too much. Our midwife was fantastic reminding us it is just an algorithm and the nipt is much more in depth. Wishing you the best xxx