Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

Antenatal tests

Get updates on how your baby develops, your body changes, and what you can expect during each week of your pregnancy by signing up to the Mumsnet Pregnancy Newsletters.

Flip

Original poster

Harmony positive for T21

10 replies

Bunty1987 · 10/05/2018 11:27

Hi,
Has anyone else had experience of a positive harmony tesr for T21?
My NT came back as 1/169 chance but I decided to go for harmony which has now come back with high risk for T21. I had amnio this week and am nervously awaiting results...
Thanks in advance x

OP posts:

LaurenSarah22 · 10/05/2018 13:18

I have a 1 in 24 chance of DS now waiting for my results from the NIPT test which I think is the same as harmony test. To my understanding they are 99% more accurate, personally if mine comes back high risk I wouldn't risk losing my baby for an invasive test, especially if it won't change your mind about having a termination or not

Original poster

Bunty1987 · 10/05/2018 13:59

Hi LaurenSarah,
I had to pay for my harmony test privately as I wasn’t considered ‘high risk’ but I believe it is the same as NIPT. I wasn’t expecting it to come back as high risk and I decided to have amnio as they say it’s more accurate as it’s diagnostic. I hope your results come back negative, the wAiting is horrid!

OP posts:

LaurenSarah22 · 10/05/2018 14:37

I completely understand sweet, and i know it's probably better to know 100% rather than just high or low risk. I suppose i wouldn't risk the invasive test as I've had 2 miscarriages. It's a horrible wait, hope you get on okay

Original poster

Bunty1987 · 10/05/2018 15:07

Absolutely, I guess when you are faced with the reality it’s hard to believe and so you look for more answers. Sorry for your previous losses, I also had a miscarriage last year so I understand why you wouldn’t risk amnio but I also wouldn’t want to make any decisions without knowing for sure. Let me know how you get on - all the best x

OP posts:

Nightmanagerfan · 10/05/2018 15:17

My understanding is that although Harmony isn’t “diagnostic’ in the way that amino or CVS is, it is 99.9% accurate for downs. What have they told you high risk means?

As Pp have said there’s only any point having an invasive further test if you would do anything with the info, ie would you terminate.

All the best to you - it’s a worrying time. I went through it three weeks ago and know how stressful it can be.

duriandurian · 10/05/2018 15:28

I had this last year. We wanted to know as this would affect whether I continued with the pregnancy. I had CVS and it came back positive. The wait was awful but the decision was straightforward altho' of course, not easy, for us.
There are plenty of lovely posters who will link you to good blogs etc. of people living happily with Downs Syndrome (e.g. "don't be sorry" on FB) as well as people living with their decision to end the pregnancy (e.g. ARC).
Wishing you all the best. I am now in a place where I am very very thankful for the NIPT, tho' of course tinged with sadness.

Original poster

Bunty1987 · 10/05/2018 17:35

The report just said 99% high risk for t21. The NHS weren’t at all concerned about my NT combined results, I just wanted the harmony for my own peace of mind - of course not expecting the results I received.
Duriandurian thank you for your words and I am so sorry to hear you had to go through that, it must have been an awful time but like you say you are now thankful for NIPT. I am similar to you in that I feel I need to know as it would probably affect my decision also x

OP posts:

Nightmanagerfan · 10/05/2018 17:43

@bunty1987 When do you get the amnio result?
I say this very gently - I think it’s worth preparing yourself for it being positive if the Harmony result is 99%, as my understanding is that Harmony is very accurate for Downs/T21.

I have been there - we decided not to continue and I had a surgical termination at 14 weeks. If you’d like any more info please do ask. ARC were also very helpful as others have said. We didn’t discuss it much with others as it provokes strong opinions and we were very sure of our decision. However I found support on MN invaluable, so please do ask if you have any questions or PM if easier.

Original poster

Bunty1987 · 10/05/2018 18:39

Nightmamagerfan - so sorry you have been through this too. I should find out tomorrow. I’m 19 weeks and have been told that they wouldn’t do a surgical termination at this stage.

OP posts:

UnderTheF1oorboards · 11/05/2018 00:03

Hi OP, there are certain categories of patient for who NIPT is less reliable, but in most cases it is accurate.

I didn't know before my son was born that he had Downs and it was a big shock, but he's the best thing that ever happened to me. I wish I could go back and tell myself then that everything would be more than fine.

Whatever decision you make you'll be living with a long time, so please do everything you can to make sure it's the right one for you. ARC can't tell you about DS (the challenges and the joys).

DSA info for new parents
A website by parents for parents and parents to be

Flip