High risk DS NHS screening 12 weeks

[Booni]

Hello, I had my 12 weeks scan on Monday and opted in for Down syndrome, Edwards and Patau screening. Unfortunately I received a phone call today and the midwife informed me I am 1:15 chance my baby is ill. I am 37 years old the NT was 2.5 (which is top of the norm) and blood results didn’t look good either 😭 I am heartbroken. I paid for a private scan - Harmony today but will receive the results in 7-10 days. Anyone in a similar situation atm? I don’t know what to with myself atm

I know it's a silly thing to say but try not to worry too much. I had the same situation earlier this year and had 1:5 chance. Paid for the harmony test which came back with 1:10000 and had a healthy baby born in July. It was a stressful wait but the results came back quickly. Just think about it the other way around, you have a nearly 94% chance of having a baby without any of the syndromes they are testing for. Sounds much more positive when you think of it like that. Wishing you lots of positive thoughts x

It's a scary thing to go through. I lost twins in June due to Trisomy 16. Because of this I opted to have the Harmony test privately at 11 weeks with this pregnancy. I was scared it would show up a problem but my results came back as very low risk exactly 7 days later.
I was told that the NHS test is about 85% accurate where as the Harmony is 99% accurate.
I have everything crossed for you and hope your results come back low X x

I was in a similar situation a couple of months ago with a 1 in 10 chance, we opted for the cvs which thankfully came back all clear but it was such a worrying and stressful time. I know its hard but try and not worry too much, as pp says the odds are still very much in your favour. From all the reading around I did the nhs screening is not great and I know many friends who've been flagged high risk but been fine. I hope some positive stories help ease your worry and that you get some good results back from the Harmony quickly, x

I was in a very similar position with my first baby, same age too which bumps up the risk drastically with their calculations. I was 1:10 but all was well with the Harmony. It’s an agonising wait, I feel for you. Ultimately there’s a very good chance baby will be fine.

The NHS test is actually only 79 percent accurate so you honestly have the odds completely in your favour that you will get a low risk result when your harmony comes back 🙂

After the age of 35 the nhs algorithm really ramps up in terms of risk (purely based on your age!) so you’re very much more likely not to have an issue here. Good luck :)

NT of 2.5 isn’t so bad! My Trust only refers over 3.5, I’d say 2.5 is pretty average. Hopefully that’s a good sign. Do you know if your blood results showed issues with the Papp A and hGC levels too?

I got 1 in 11, and someone pointed out to me that meant baby had 96% chance of being fine. My harmony test came back clear. It’s stressful as hell though so big hugs for you and I’ll be crossing my fingers you get clear results.

@FizzingWhizzbee123 thank you for your reply. Yes, the blood results showed issues, both lower unfortunately. Were your blood results okay? I am so glad your harmony test came back clear xx

Try not to worry OP, but I know it is easier said than done. I was given a score of 1:7 and we were really worried. At my 12 week scan bubs was in an awkward position and refused to budge so they were not able to measure. Instead of offering me another scan they did a blood test about a couple of weeks later and said there was a 1:7 risk. Did a Panorama test and was told we were low risk. The consultant at the private hospital (where i had the panorama test done ) said that once you are 35 or over they generally consider you high risk. Hope you get the all clear soon. Try not to stress.

I do understand as we had a risk of 1:80 with our first and had the harmony test. I was in a very bad way for the 2 weeks between getting the nuchal screening results and the results of harmony. I appreciate your risk is a lot higher, so can only imagine how much more stressed you are. Just try and remember the odds are very much in your favour and the nhs screening result is being massively screwed by your age. I am 38 years old expecting my 3rd and we are opting to go straight for the harmony test to try and avoid this agony again.

Also, not that it helps, but if there is an issue, it is best to know now so you can make informed decisions.

Sorry you’re feeling so worried. I just wanted to say that having Down syndrome doesn’t mean your baby is ill. We had a postnatal diagnosis of DS following the birth of DC1, he has no medical complications and is a happy healthy toddler now! Another thing to note is that the harmony test is not diagnostic, it is only a screening test (more accurate than the NSH screening but still cannot tell you if your baby does or does not have DS). Wishing you all the best for the rest of your pregnancy x

Have you had your results back? x

Hello, yes all clear. Only received the results back today in the morning. Thank you x