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Harmony and real outcome

(10 Posts)
Lorakk Sat 27-Apr-13 18:10:52

Hi ladies, i would like to ask you if anyone had a baby already? BadMissM, ordinary Girl, alm83,positive38,gatorade etc? Basically i also had high risk on NHS combined test, went to have Harmony which came back normal. I am 20 weeks now and wondering may be it was a mistake and i should have had amnio instead. I have found recently info about false negatives for Harmony Not many cases but still ...worrying Did it happen here? among us? Thank you in advance for your help

NewPerspective Sat 27-Apr-13 21:46:55

Just an observation, but medicine is very much "applied statistics". Asking a question like this, you're likely to get a rather skewed perspective... there are "false negatives" AND "false positives" in many tests, and asking for individual anecdotes will almost certainly generate some, and that could cause you to worry further.

You've taken two tests, neither of them test for a condition, they test for "likelihood", so for one to be "high risk" and one to be "normal" is just the mathematics behind the each test at work. There are academic sources for both tests in action and I'll share the links if you're interested in really breaking down what the results mean.

I am sure you want to have a happy and healthy baby; and worry is only natural... when we were expecting our first there were some very worrying signs. We made the decision that no matter what happened, we were going to do our best to have and raise a child... we declined invasive testing and couldn't imagine being happier (I am deliberately leaving out my child's health, because to us it doesn't matter, a child is a child).

I remember being where you are, and don't envy you at all. Best of luck.

igves Sun 28-Apr-13 19:17:30

I had a very high NHS combined score but 1 in 10,000 with Harmony. I'm due in two weeks and like you have moments when I wish I'd gone for the certainty if an amnio. I do know hiw you feel. I thought false negatives were virtually unheard if though, can you point me in the direction of the evidence you found?

Lorakk Sun 28-Apr-13 20:23:49

Hi thanks for your response. I have googled nipt and that was an article about maternity 21 test which is similar to harmony. Out of 283 women with babies with abnormality they missed 2downs and one edward. false negatives they were. I was in shock when I found out about my high risk plus its a first pregnancy and may be the last. I am 37. So I couldnt make the right decision at that time. Now baby is moving and its hard again to think about amnio. But on the other hand I dont think I will cope with down baby. I still can probably do amnio ,but cant make my mind. In my case its 1% risk of miscarriage with amnio and the same risk for down. I am still thinking what to do. Next time, if its going to be next time I will definitely go for amnio. all the best for you

DaniZ Tue 04-Jun-13 18:05:49

Hi Lorakk, what were your odds after the NHS test?

Gatorade Tue 04-Jun-13 21:36:04

Hi Lorakk, I'm 27 weeks now so I haven't got a happy outcome to report yet, however I found my 20 week scan (both NHS and FMC) very reassuring.

Given my higher odds at the 12 week scan the sonographers spent a lot more time checking for DS markers and didn't identify anything of concern. Have you had your 20 week scan yet? I am hoping it might be of some comfort to you.

If it is all going to really play on your mind and seriously impact the rest of your pregnancy you could consider having an amino in about 8 weeks time, the baby would be much more likely to survive at that point if it had to be delivered if the amino caused a problem?

The other thing to remember is that the chances are heavily in your favour that everything will be fine, the Harmony will have given you odds of there being a 1 in10,000 risk of the baby having DS, if you had been given that risk rating (or even a 1 in 1,000 risk) at the nuchal scan stage I imagine it wouldn't have crossed your mind again.

I also read about the false negatives in the Maternity21 results around the time I decided to have the Harmony test. I mentioned it to the FMC but the doctor I spoke to said their understanding was that the Harmony test was more accurate, although I must admit I don't have any scientific papers or data to support this (or even an understanding of the difference between the tests).

Good luck with the rest of the pregnancy, try to enjoy it.

Gatorade Tue 04-Jun-13 21:41:02

Sorry Lorakk I have just relised this in an old thread so you are probably further along than me! How are you getting on? Feeling any better?

Lorakk Wed 05-Jun-13 17:23:44

Hi thanks gatorade I am actually 25 weeks. Scan 20 weeks was ok and it is reassuring. To be honest I have good and bad days and I wish I could have smth definite like amnio but without its risks. However its not possible. I hope some of the girls who had harmony and ahead of me ,would tell us about the outcome . So far it was rtchoke ,she had healthy baby with odds 1 in 10 combined and 1 in 10 000 harmony.

DaniZ Thu 06-Jun-13 06:53:55

Not sure this helps, I was given a 1:33 risk at the 12 weeks combined test, went crazy, thought luck would have it i'd be that '1'. Went straight for cvs and everything came back clear. Lorakk, your odds are much better than mine, and you had the Harmony test which came back fine, so there's probably little point in worrying. I wish I had your strength and did the Harmony instead of cvs, looking back I'm not sure it was worth risking it for the sake of 2 weeks' worrying while waiting for the results. I would encourage everyone to have the Harmony instead of invasive tests, it is as accurate it can be without taking the risk. Your odds are heavily in your favour, and you had a good result at your last scan, so try to relax and enjoy your pregnancy

Lorakk Thu 06-Jun-13 11:37:25

Thank you daniz I think I will not have my piece of mind till its over. Its 3montns left till baby is born and I hope it will pass quickly Thanks again for ur support

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