Positive NIPT for T18

[DragonflyRuby]

I’m not sure what I’m expecting anyone to say on here but I suppose I need an outlet. I’m nearly 13 weeks pregnant and had the results from our private NIPT test back today with a High Risk for T18 Edward’s syndrome.

They called me this afternoon to tell me although I don’t feel like the lady giving the result was particularly helpful or knowledgable. She said their tests are 99% accurate however I understand from limited research this afternoon and a call with ARC that that’s not actually the case.

I have my 12 week scan on Friday when I’m 13 weeks so assuming the result is correct I believe there’s a high chance they’ll be able to see some abnormalities on the scan. I know the only real definitive way to know is with an amniocentesis.

Please share your stories of a high risk T18 NIPT, positive or negative. I just feel very alone at the moment and would like to know what happened to other people, Thank you.

Hi @Lexilexi123 I am genuinely so, so happy to read that and I wish you all the very best with your pregnancy. I really hope you are able to enjoy the rest of it after what has been such an awful ordeal.

Sadly I don’t have a positive update. We had our anomaly scan last week where they picked up some abnormalities in her brain. This is the first time any abnormality had been seen (17 weeks) and we didn’t have the amnio results back at that point so tried to remain slightly optimistic although the brain abnormality is severe.

We have now received the amnio results and the devastating news that our baby does have full trisomy 18. It was expected after our scan but obviously still awful to hear.

We will be saying goodbye to our baby next week at 19.5 weeks. I don’t know how I’ll feel afterwards, at the moment everything is hard as I’m obviously still carrying her and feeling her move, but I do feel like our decision to save her from pain and suffering is the right one for us.

I’m truly glad your baby is going to be OK and I’m pleased that anyone who reads this thread in the future worried about a positive NIPT will see that my outcome isn’t the only one.

Sending love ❤️

I wanted to say that I am thinking of you OP. I cannot imagine what you and your partner are going through. Just know you have the love and hugs from a stranger who really cares x

@DragonflyRuby oh this is devastating news. I’m so so sorry. Heartbreaking. I know you’ve been through so much before and then through this pregnancy. I really hope you give yourselves plenty of time to process this all and grieve and find support to help you do so.
@Lexilexi123 that’s such brilliant news, I’m so pleased for you and wonderful to hear a false positive story.

For my part I’m back in hospital, just waited 4 hours to see a doctor after finally got given another scan and turns out still some pregnancy tissue remaining (lesson to self and anyone else going through this in future: push for a scan if you’re still bleeding after 6 weeks even if it stopped for a bit). We were desperate to go on holiday tomorrow but now facing surgery, though probably not for a few days, so going to have to cancel going away. I realise that may seem incredibly trite but just to share where we’re at! For our mental health we really needed a break so it’s tough.
Sending much love to you all.

@DragonflyRuby I’m at a loss for what to say… I am so so so sorry to hear your devastating news. There is nothing anyone can say to make it better for you but just know that I am sending you so much love. I totally understand your decision (we had decided to do the same if we had a positive amnio result) and am in awe at how strong you are being. The next few weeks are going to be so incredibly tough and I will be thinking of you the whole time. I’m sorry again and again.

@ConcernedafterNIPT I’m also sorry to hear that your experience is dragging on for so long - it must make it so difficult to turn the page. You should absolutely look to get away when you can - you will so deserve after all of this.

This whole journey is an absolute rollercoaster and I just want to thank everyone on this thread for being so caring and open… lots of love

@DragonflyRuby I've just found your thread, I'm so sorry that this has happened to you and your baby. I will be keeping you in my thoughts ❤