1 in 19 chance of DS - looking for reassurance

[Marmite2018]

Hi all,

I had the call yesterday to say that our baby has a 1 in 19 chance of DS. Other two test results came back okay. My NT measurement was 3.0mm but they really struggled to get a good reading as baby refused to wiggle into a good position! I’m 31 and my midwife said my NT measurement, with my high HCG levels (didn’t ask what they were), gave me the reading. I’ve got the SAFE test booked for Monday and then an agonising wait for blood results.

I don’t know what I’m looking for really but just so worried. I have a healthy 2 year old who we had none of these worries with during my pregnancy with her. I guess I didn’t really prepare myself for anything being wrong.

Thanks!

[Mummy2O]

Hi @Marmite2018.

I have been through this too. My NT measurement was 3.3 and I had low Papp-A which gave me a 1 in 22 chance of DS and a 1 in 9 of the other two syndromes. Long story short, everything was fine in the end.

1 in 19 is just over a 5% chance of your baby having DS so the odds are in your favour. Waiting for the results is excruciating. Try to keep busy and active as it will help the time to pass.

I'll be keeping everything crossed for you. x

[Marmite2018]

Thank you so much @Mummy2O, it’s just excruciating and my head is all over the place. One minute I feel really positive and the next I am sick with worry. I really appreciate your reply and I’m so glad everything worked out well for you.

[Mummy2O]

It is perfectly normal to feel that way. I was all over the place. I struggled to concentrate on anything and my emotions were all over the place. x

[jmm499]

Hi @Marmite2018 so sorry you’re having a worrying time, I’ve been there too - it’s so hard to think of anything else. Our baby had a ‘greater than’ 1 in 4 chance of DS - mainly due to an increased NT (4.7mm) and low papp-a. After various tests he cleared them all and was born safe and well in July ❤️ Sending you love and strength and hoping you get positive news xxx

[Marmite2018]

Thank you @jmm499. NIPT tomorrow and holding out all hope my results are back soon with positive outcome. Has been a rollercoaster of emotions this weekend, think I’ve just walked around in a daze!!!

[MrsTiffin]

Hi @Marmite2018 I had the same as you, 1:19 for my first child when I was 34. Had the NIPT and everything came back clear.

When I got pregnant with DC2 we just went straight to NIPT again, I didn't have the NHS screening because I knew even if it came back low risk I'd prefer the reassurance!

As others have said it's 5% chance which is really low. Keep us posted and thinking of you

[Marmite2018]

@MrsTiffin thank you so much. I’m just holding on to everything being okay. Had my NIPT on Monday, just such a long wait until we hear. I also feel so detached from this pregnancy, it’s making me quite sad. I have been quite unwell at the start so was looking forward to getting to 2nd trimester and getting excited. It’s just such a rollercoaster! I’ll keep you posted how I get on!

[Liveforholidays]

I had a 1 in 13 chance back in November 2019. It hit me like a bolt out of the blue because everything looked so good on the scan. I also opted for NIPT and got a low chance result. The waiting for the results is the worst bit and I scrutinised every mumsnet post on the subject while I waited (not sure I'd recommend that as it drove me insane!). I was also really detached from the pregnancy and bitter with the world for being put through it. You just have to hang on in there and distract yourself. I would say that my baby arrived in June 2020 and he is the light of my life.. I think I'm actually more grateful and appreciate him more because of the rough time we had during pregnancy. Does that make sense? I just feel so lucky that he's here, safe and well and healthy and I'm not sure I would have felt like that if my pregnancy had been plain sailing.

[Dogsandbabies]

I am sorry you are going through this OP. I went through it recently. I opted for the CVS and once I got the all clear from that I had a further agonising wait to 20 weeks for the echocardiogram. Sometimes the increased NT is a sign of heart problems.

Like you, I felt very detached from the baby and the pregnancy. I got the all clear from the cardiologist on Monday and suddenly within a couple of days I feel weirdly elated and suddenly, very attached to the baby.

Don't beat yourself up. It is such a hard thing to go through and it is a natural mechanism to detach in order to protect yourself. I am hoping everything goes well for you.

[legohaus]

Hi @Marmite2018 - I don't have any comforting words because I am in the same position - had our 12 week scan on Monday and was immediately referred to Fetal Medicine with an NT of 4.2mm. I don't have any odds at the moment because we declined the combined screen and went straight to NIPT, but on the NT alone they are concerned.

I also had the NIPT on Monday and, like you, I am feeling horrendous. I have spent the last three days crying and googling. Can't think about anything else, but already feel differently about the baby than before. Very complex emotions.

I am right here with you if you need a friend xx

[Marmite2018]

Thank you all so much for your kind words and support. It is so nice (although sad) to have others who are in or have been in similar situations. @legohaus I really hope our outcomes are positive. It really has been a very strange week. We haven’t told anyone either but every time someone asks me if I’m okay, I start crying! I just blame the hormones! Sending love and hugs x

[KV1212]

Hi, exact same have a healthy 2 year old got a phone call yesterday to say I am 1/100 chance of edwards syndrome now debating weather to have the NIPT screening or the CVS Screening want the most accurate results...
Hope your ok

[Marmite2018]

@KV1212 I’m so sorry you’re in the same boat. It’s such a worrying time. I’m really hopeful that everything will be okay for you. I went for NIPT, it has very high accuracy rates and was suggested as a first port of call by my midwife. If I have a bad outcome from that, then I will have more invasive testing. I think it just depends how you feel about the chance of miscarriage. I didn’t want to take a risk on what could be a healthy pregnancy until I was more sure. 1/20 women get a “high risk” screening result so, from my endless googling, I’ve realised that results like these are common and not definitive. I hope that helps put your mind at ease. Whatever you decide will be right for you and your baby. Sending a hug x

[Marmite2018]

I just wanted to come back and update, in case anyone else finds themselves in my position and needs reassurance. My NIPT results came back today, am impressed considering the bank holiday, and I am now low risk with a 1 in 100,000 chance for all trisomies. Just such a relief and feel so reconnected to this pregnancy again.
Sending a hug to anyone in my shoes.

[Mummy2O]

@Marmite2018 So glad to hear you are now low risk. Wonderful news. x

[legohaus]

This is great news @Marmite2018. I'm still waiting for my NIPT results but your post gives me hope x

[KV1212]

So happy for you :)
I had my nipt screening on Saturday just the waiting game now xx

[Marmite2018]

Good luck ladies, really hopeful you have the same positive outcome x

[Mummy2O]

Good luck @legohaus and @KV1212. I'll be thinking of you. The waiting is horrible. x