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Deciding whether to have the Harmony test?

31 replies

tisonlymeagain · 28/05/2019 10:51

Hi,

Hoping someone can offer me some advice. I just got my BFP and I've been reading about Harmony but I can't decide whether to go for it or what and see what NHS results come back with. I am 39 so I am expecting them to naturally come back on the higher risk side.

I'm not worried about the cost of the Harmony, I'm just not sure if I am over-stressing about it or whether it would actually be a good idea given my age?

We would make difficult decisions based on the results of such tests and I can't help but feel the earlier we find out the better?

OP posts:
AutumnGlitterBall · 28/05/2019 11:01

I didn’t plan to have the Harmony test but the baby just wouldn’t play ball at the twelve week scan for the Downs test. In my first pregnancy, I had to have the blood test at my sixteen week appt which then didn’t come back til nineteen weeks. I didn’t want to wait so long to know this time as I’m closer to 40 than 30 now! So we got the Harmony test done at 13 weeks. The result was back in five days. I’m told it’s more accurate than the NHS test and we also found out the sex (though you can opt to not find out).

JoJoSM2 · 28/05/2019 16:05

I had the Panorama test at 9 weeks. It was great to not need to worry about the conditions tested + find out the sex ;)

Weathergirl1 · 28/05/2019 18:40

The Combined Test is less accurate the older you are (as well as the risk factor increasing just because of your age). Expecting Better by Emily Oster has a really good explanation about it that I'd recommend you read - the PHE information provided by the NHS does not explain this stuff and that's a real bugbear if mine! If money is not a concern I would recommend NIPT - I am also 39 and we had Harmony - it was a no-brainer for us and we were reassured we'd made the right decision speaking to the consultant we saw who also reckons the Combined Test isn't very good (private appointment in NHS hospital).

We had it at 11weeks and had the results back in a week (included a bank holiday!) so we knew before we went for the NHS scan (which was actually at 13 weeks) and that made me feel more comfortable as if we needed to do a CVS we'd be able to do that earlier too. As a PP says, you can also choose to find out the sex too at this point.

JackiePaper · 28/05/2019 19:44

The NIPT (harmony) is more reliable than the combined screen (99% vs 85%) but it is not a diagnostic test, it will be wrong 1% of the time. As long as you are aware of that go for it

tisonlymeagain · 29/05/2019 11:06

Thank you all - I think given my age, I will probably go for it, just for some reassurance. If there are decisions to be made I'd rather do it as soon as I can.

I don't want to know the sex though!

OP posts:
Weathergirl1 · 30/05/2019 10:57

You can ask them not to look for the sex chromosomes 👍

tisonlymeagain · 31/05/2019 12:15

Thanks @Weathergirl1 I will do that.

I am definitely erring on the side of having the test done, if only to alleviate some stress.

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mistermagpie · 31/05/2019 13:31

I'm having it tomorrow! I'm 39 which has swayed me towards it. It's £400 which is pricey but I have private health cover for some things and it covers the test. I'm not finding out the sex. The sonography at my scan said she would absolutely do the same.

tisonlymeagain · 31/05/2019 14:17

Thanks @mistermagpie I am going to talk to DP. It's a lot of money but I think it's going to be worthwhile.

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TheChineseChicken · 31/05/2019 14:23

I had it for DD and it gave me real peace of mind. I went to a lovely clinic and had a bundle including the test and my 12-week scan so I also had a scan that was more detailed and 'better' than the NHS one for more reassurance. I am newly pregnant now and will have it again. As an aside I also opted for a private 20 week scan as I liked the clinic so much. The quality of the equipment and the appointment was so much better than would be available on the NHS for obvious reasons.

Bluebell9 · 31/05/2019 14:52

I would if money isn't an issue for you.

I'm 34 and currently 19 weeks pregnant. They couldn't get a NT measurement at my 12 week scan and tried again at 13 weeks with no luck.
I ended up having the quad test which came back as 1 in 17 chance of Downs Syndrome. By this time I was 15/16 weeks.
My NHS trust offered the NIPT (harmony) and I then had a 2 week wait for the results which were less than 1 in 50,000.
Obviously I'm thrilled with the low odds from the harmony but the wait for the results after was awful.
From what I've read, the quad test is even more unreliable than the combined test but it didn't console me much when we were waiting for the results.

SylvanianFrenemies · 31/05/2019 19:44

I would have it.

My DC3 had downs syndrome and multiple abnormalities, I had a termination at 18w. It was devastating. It would have been better to know earlier I guess. In the unlikely event you get a problem showing up you can get an CvS or amino to confirm before taking any action.

Hope things go well.

agteacht · 31/05/2019 21:54

I had it, got the results today. It felt like a lot of money at the time but getting a low risk result today was definitely, definitely worth it. I'm also a bit older, 36. I am waiting for my NHS results at the moment, will be interested to see how they compare.

Sizeofalentil · 31/05/2019 21:57

I had the harmony test and it was a quick, easy and positive experience.

tisonlymeagain · 01/06/2019 18:53

Thank you all, it's great to hear your views and that nobody has ever regretted doing it or felt like it was a waste.

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clutterqu33n · 02/06/2019 07:44

If there are decisions to be made I'd rather do it as soon as I can.

OP, I think it is also important to keep in mind that this test only checks for the main trisomies. Most disabilities cannot be tested for antenatally. often, disabilities are the result of rare chromosome issues (not detectable by the harmony), premature birth or birth complications. I help to run a local support group for parents of disabled children and out of 300 or so families, one has a child with DS. the rest have other conditions. I always say that if someone doesn't want a disabled child then it is best not to have children at all.

SylvanianFrenemies · 02/06/2019 22:00

"I always say that if someone doesn't want a disabled child then it is best not to have one at all".

I wanted my son. I wanted him however he was, and would have loved, cared and fought for him.

We terminated for many reasons. His DS had caused severe heart problems.He was unlikely to survive and if he made it to birth may have lived out a short life in hospital. People with DS have high rates of childhood leukaemia and early onset dementia, and mental health problems.

Accepting and loving a living disabled child is a different thing from choosing to bring a child with severe disability in the world. I

Maybe think before you post @clutterqu33n

lauryloo · 02/06/2019 22:11

@SylvanianFrenemies so sorry for your loss. That must have been a hard decision to make

SylvanianFrenemies · 02/06/2019 22:24

Thank you @lauryloo

It was, and is, the hardest thing we've ever gone through. He was due to be born this week and we miss him. Luckily we have two great DDs I wish people understood that having a termination for medical reasons isn't about not wanting your baby, disability and all. Thanks again for your kind words.

tisonlymeagain · 03/06/2019 20:27

Thank you for your input @SylvanianFrenemies and sorry for your loss. So hard to make the decision but sounds like you made the right decision for your baby and your family.

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LittleDoveLove · 03/06/2019 21:05

I am 36 (was 35 at the time) and had the Harmony test by choice at 10+3 as I knew I would also come back higher and I would rather know as soon as possible. For me I was glad I had it and could relax mostly from 11 weeks. We also found out we were having a boy so I could plan from early on!

tisonlymeagain · 04/06/2019 14:04

The decision I am struggling with is whether I should do this before NHS tests or just wait and see what they come back as?

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waterandmilk · 04/06/2019 15:34

"I always say that if someone doesn't want a disabled child then it is best not to have one at all".

I always say that if you are not going to support another woman asking for help then it is best to scroll down and leave.

Most babies with Pataus and Edwards will only live a few weeks, it is not about disabilities is it?

OP I had mine, I didn't for my first pregnancy and regretted it as I was very anxious until the end.

waterandmilk · 04/06/2019 15:36

Oh and I did the Harmony before. Which means I am now chilled waiting for NHS results now. In a way though maybe I should have opted not to have the DS NHS test because I had a more accurate answer from Harmony and if they now give me a high risk I could unsettle myself.
Have a think.

BertieBotts · 04/06/2019 15:43

It doesn't matter so much when it's done. If Harmony comes back high risk, you would still need to have an amniocentesis to find out for certain. So it's really more of an advisory tool about whether you need to have the amnio. You would not want to terminate based on a high risk Harmony, because there can be false positives.

Given a choice between combined test and NIPT I'd definitely do NIPT, though cost would also factor if obviously. There are a few different options so you might want to look at what is available. Not all of them test for the same things.