1 in 38 Edwards and Patau’s Screening Result … HELP

[SJG1987]

I’m 13+6 and received a worrying combined screening result (1 in 38 chance for Edwards and Patau’s). I’ve been offered a CVS (100% definitive answer but 0.5% chance of miscarriage) or an NIPT (97% accurate for Edwards, 94% accurate for Patau’s).

Has anyone been in a similar situation and what did you decide?

Sorry, that Mumsnet link doesn't work but just Google "Mumsnet antinatal testing" and the forum board should come up. Be sure you are emotionally prepared for it, though m, as it is a difficult place.

Also, my experience was super typical. Here is another person writing in much greater depth about theirs, and it is similar to mine, though I did a lot less testing. One thing worth noting in her story is the high false positive rate with NIPT, which is part of what made me decide against it. https://www.mumsnet.com/talk/antenatal_tests_choices/4542751-our-edwards-story

Thank you. I did manage to find it last night and had a good cry - I was not ready.

My PAPP-A is 0.2 and HCG 0.25, so both very low. I had a scan yesterday as well as the NIPT. It’s just so hard to know what to do and how to feel. I’m finding myself looking for stories with success, just to remain hopeful to get me through the next 10 days whilst I wait for the results.

It is so hard, it is just so hard. It is hard to find out how many things can go wrong in a pregnancy, hard to be pregnant and not know which way it'll go. I think it is worth being optimistic and reading success stories, and during the testing period did the same. If you have good results, you have had 10 much better days of your life, and if you have bad, you will have spent 10 more days together with this little one, even if you won't spend your lifetimes together. And even if the results are bad, there is reason for optimism on the other side. I say that as someone who is pregnant with the next little one who who I think I will get to spend a lifetime with. I wish you so much grace and strength and courage as you wait.

Just thinking about you and hoping you are getting on ok @SJG1987. You are no doubt still in the waiting period, but I hope you have found many reasons to be hopeful.

Thank you for thinking of me! We actually got our results on Friday. I couldn’t believe it after only having the test on Monday. Thankfully we were low risk. I’ve booked a private well-being scan for Monday when we turn 16 weeks for peace of mind, but everyone I speak to professionally said positive things about the reliability of the NIPT test.

Wow! That is absolutely the best, I am so pleased for you. And yes, NIPT is super reliable. I wish you an exceedingly uneventful rest of your pregnancy.

Thanks for the update. I'm so glad you OP x

I honestly can’t explain how helpful it’s been having everyone’s views - even, and possibly especially, where your news hasn’t been positive. It’s so courageous to share, so thank you. I can’t wait for Mondays scan now. I’ve had a long chat with the sonographer and I hope it will blow away any worries I have left about it being the NIPT not being accurate because it’s just a screening test.

I got a letter saying I had a higher chance of 1 in 64 of Edward’s syndrome and pataus. I’m absolutely devastated and preparing myself for the worst. My NT was 1.7, I thought everything would be okay but I feel like the odds aren’t in my favour. Can’t stop crying. Just needed to voice how I was feeling because I feel like my family don’t understand and keep telling me it’s going to be okay

Sending hugs @mands041195
Are you going ahead with NIPT?

@SouthwestSis yeah I’m going to, I feel so alone right now the doctors won’t be open until Tuesday I’m guessing because of the bank holiday tomorrow. I just know deep down the baby must have it looking at those odds. I’m devastated

You are so, so not alone. There are many of us, and what you are doing is going through a really hard, dark time. But it isn't a time you are in alone. Please contact ARC if you need to talk to someone - they will really, really understand what is happening and will speak to you about how you are feeling.

I am not going to tell your your baby will be alright. I sincerely hope so, but they might not. Mine was not. But in the end, after a hard, dark time, I came out ok. Battered and bruised, but on the other end. Sending you so much support and so much hope for your little one, but most importantly, so much strength for yourself.

I remember it being the worst time. Thinking of you. Stay strong, remember it could go either way and the odds given are not diagnostic. @mands041195

@EMcG3 @SJG1987 thank yous, I will send an update when I know. Praying that all is okay 🤍

Hi @mands041195 , so sorry you are going through this stress. Just wanted to emphasise that a 1/64 chance is a 98.4% chance that your baby is just fine. Also remember that this result doesn’t mean anything in terms of what they have found out about the baby. They base these probabilities simply on your age and hormone levels, it definitely doesn’t mean your baby is likely to have anything wrong, it just means they want to do extra testing to rule stuff out (as older women are higher risk for example). The nuchal fold is the only marker directly related to baby and the fact that it is 1.7 is great news. The overwhelming odds are your baby is just fine xxxx

Thank you for this message it’s made me feel a bit more at ease. I find out on Monday so I’m praying that all is okay xxx