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What were your combined screening results?

25 replies

Johno85 · 02/01/2017 17:03

Hiya, I had my 12 week combined screening results back today. My July babies 2017 FB group have been really reassuring but just looking for similar stories.

Edward's and Patau's was low at 1 in 14106

Down's came back as low at 1 in 185

I'm 31 and pretty healthy so was just expecting a better result for the Down's syndrome score. I'm already a haemophilia carrier so know baby has 50% chance of being a haemophiliac if a boy and 50% chance of being a carrier if a girl. This I can deal with as I understand it and have known for years.

Don't get me wrong I know 99.45% chance the baby doesn't have Down's is amazing, but given the Nucheal fold measurement was good at 1.6, I was a bit surprised.

I know people have much worse results; two colleagues of mine had 1 in 22 and 1 in 77. One had the Harmony test with a great result and a gorgeous and healthy little girl. The other had the amnio and has a lovely healthy little boy.

I guess like most people on here I'm just trying to a)make myself feel better b)totally get it into my head that I don't need to fork out £400 for an essentially unnecessary Harmony test and c) get a grip!

Thanks all in advance x

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Lilly948204 · 02/01/2017 17:16

A lady on another site I'm on had 1:50,000 odds of her baby having DS and at the 20 week scan he was diagnosed as having it. And another had 1:850 and her little girl had it when she was born. Yet I have seen loads of ladies with odds lower than yours who have gone on to have the harmony test and everything has been fine. I guess you need to think what would you do if you had a DS diagnosis. Would you end the pregnancy? If yes then I can understand having the expensive test and then being able to end it sooner. If not then I would wait and see if anything comes up at the 20 week scan. Keep in mind that the harmony test still only gives you odds again, not a definite diagnosis. If it was me I wouldn't worry as your odds are still classed as low risk. Xx

zambean · 02/01/2017 18:22

I got 1 in 23 for Down's. A combination of low PAPP-A (about 0.5 MoM), high bHCG (about 2.5 MoM), and my age (will be 35 when the baby is born).

Was a hell of a shock, and made worse by terrible communication and treatment from the hospital. We went for NIPT and had the week from hell waiting for our results to come back, but they came back as 1 in 1,000,000 for all three trisomies.

If I knew then what I know now, I would have skipped the NHS screening altogether and had NIPT immediately. The NHS screening is a very blunt instrument.

zambean · 02/01/2017 18:24

Tbh I'm not a good person to talk anyone out of forking out for the Harmony test. I think if you have the cash to spare, and it brings you peace of mind, it is well, well worth it.

Johno85 · 02/01/2017 18:29

Hey lily thanks for the info. Just goes to show there are no guarantees. Hey zam I feel like such an idiot worrying about 1 in 185 when you had a much worse score and went through everything you did. I'm really glad to hear everything is ok though. I didn't get any of the other scores for the bloods so only have the ratio to go with. I'll speak to DH and see what he says this evening. My colleague who had the harmony test only waited a couple of days for her good news. Did you have just the bloods or another uss? X

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zambean · 02/01/2017 18:38

I went to the Birth Company on Harley Street where for £500 you get the blood tests, as well as another ultrasound, with lovely pictures and video. It was hard to enjoy the experience at the time as I was so anxious, but now it's lovely to have the video - you can really see the little bean wriggling!

It all depends on first, whether getting a positive result will make a difference to you - I was pretty clear that if it was positive, I would terminate, so I needed to know. And second, whether you can live for the rest of the pregnancy with the uncertainty. I knew I couldn't, so it was a no-brainer really. I wasn't prepared to undergo amniocentesis unless absolutely necessary, because hwoever small the risk, it is a risk.

It's annoying for us because NIPT will be standard in the NHS in the next couple of years. We've just been unlucky with timing. Still, I consider myself very lucky compared to the women who can't afford to pay for the tests, or who get bad news.

Mooseville · 02/01/2017 18:55

I am 38 and my results came back as 1:10... yet the midwifes said all my bloods and the nuchal measurement (although on high side of normal) were all within normal. They described it as a grey area with the statistics and that they would expect a NIPT to come back normal (although could not guarantee it obv)
I had the NIPT and all was fine, 1:1000000
However, had I researched the NHS tests before I would have definitely chosen to have the harmony and avoid all the stress and worry for nothing! TheNHS screening seems very unreliable with a false positive rate of up to 60% if the mother is over 40! That's ridiculous! How many women are getting high risk results and going through all they worry for no good reason when there are more reliable tests!

Snowflakes1122 · 02/01/2017 19:23

I'm 30 and got 1 in 6000 for Downs. Think nuchal was 1.8 or 1.9.

Sometimes I feel it's like they pluck a number out of thin air!

Johno85 · 02/01/2017 20:05

zam we're in the same camp as you if it came out as positive for DS. The stupid thing is I know that 1 in 185 is great odds.

Hey moose are you glad you went on to have NIPT? I'm totally with you with the crazily high false positive results. It's just nuts, like snowflake said like a number out of thin air.

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Seahawk80 · 02/01/2017 20:31

I'm another one who thinks the false positive rate on NHS is crazy, I came back as 1/13 for downs and 1/14 for the other two. I had a CVS and waiting for the results was hellish. If you can afford the harmony test I would do it for the reassurance.

Johno85 · 02/01/2017 20:57

Hey seahawk what was your result after cvs if you don't mind me asking? It's at a time like this a few pints of cider would go down a treat! Oh man I'm so torn. I know it's good odds but I'm still tempted by harmony.

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ellesbellesxxx · 02/01/2017 21:04

I am expecting twins and got my results last week... twin 1's nuchal measurement was 2.2mm so the risk of DS was 1:5000. However twin 2's Nuchal was 2.7mm (not that much different?!) but the risk was 1:650! Bearing in mind blood results would be same and my age etc I guess that they look at the statistics and then use all the factors to calculate? It does seem odd.

Seahawk80 · 02/01/2017 21:10

Of course I don't mind. CVS was all fine, such a relief. It's a long story but it might interest you...

We'd actually had the harmony test at FMC the week before 12 week scan and were due to get the results a week after. I just said I'd have the NHS scan without really thinking and we got the results same day, 1/13 and 1/14. It was devastating as you can imagine. We decided to have cvs there and then for lots of reasons. Although it was only a week until harmony results I was so floored by the 1/13 and thought that if harmony results were higher risk I'd be back to square one. Also risk of miscarriage was so much lower than the screening risk and Kings have an excellent record. We were also coming up to Xmas and while I didn't care about knowing in time for Xmas I was conscious that if we waited for harmony results and still needed cvs we'd face an extended wait for the results due to things closing / slowing down over the holidays.

So anyway 2 days after the cvs was clear we got the harmony results and the blood results were 1/10000 which is the minimum they can be. I'm another one who wouldn't have the NHS tests again.

Feel free to ask if you have any other questions and good luck!

Johno85 · 02/01/2017 21:27

Elles congrats on scrummy twins! Another example of the bizarreness of these tests. I'm assuming my result must be on my bloods as my NT was only 1.6.

Crikey seahawk you have been through the bloody mill haven't you! So glad to hear everything worked out for the best. I'm gonna have a really good chat with DH in the morning as he works till late and see what he says. I guess I've just gotta bite he bullet and be content with the low risk or shut up and book the harmony test.

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Seahawk80 · 02/01/2017 21:36

Thanks Johno just so glad it was ok in the end.

I guess as others have said it depends on what your decision would be if it was positive. It's a hard one to make I know.

SarahOoo · 02/01/2017 22:14

With my bloods being half of what they should be and our NT being 3.4 and my age of 32, our T21 (DS) risk was 1:85, if it was based solely on my age they said it was 1:450 or similar.

We were at the Kings Harris Birthright Fetal Medicine Centre and while I feel we had excellent care, on reflection I think we were made to feel a lot more scared than we needed to be. The very next morning we had the CVS which is a diagnostic test and our baby girl didn't have any of the trisonimies or any other issue they are able to test for. At the 20 week anomaly scan we also had an extra heart scan which was fine too so big relief for us.

I only really discovered the mumsnet chats as I was trying to find help when we were in limbo between the test and the results, it was such a support to read even both sides of the outcome and I became much more level headed.

Johno85 · 02/01/2017 22:27

Ah sarah I'm really glad to hear your story. My letter didn't contain any of the blood details, only the risk factors. Probably a good thing given my stressing with just the ones I have!

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SarahOoo · 02/01/2017 22:46

We got our results the same time as the scan but think this is a Kings College thing as its a research centre.

What you have to decide is if there were any chromosome issues would it change things? If so then go for the Harmony test, it's still a screening test but highly accurate and no risk involved (unlike the CVS procedure we had). For us having T13/18 would changed things as they are likely to not survive the pregnancy. T21/DS we didn't know what we would have decided.

theheatherjane1 · 03/01/2017 18:21

I'm 42 so was expecting the worst but ours came back as 1/950. Very chuffed indeed.

Johno85 · 12/01/2017 21:21

Just a little update in case anyone was interested. Our harmony results came back all good at 1 in 10,000. We also found out we're having a baby boy x

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Seahawk80 · 12/01/2017 21:40

So pleased for you! You must be so relieved!

Dch0728 · 13/01/2017 11:37

I'm on my 15weeks4days and was informed that i'm at high risk for DS 1/67. Can anyone share the same experience. I'm so worried 😭

SarahOoo · 13/01/2017 12:24

Hi Dch0728 we had a risk factor of 1:85 for Down's Syndrome. We decided to have the CVS the very next day (Harmoney test was mentioned but I had no idea what it was so all very confusing and we were at Kings College Hospital). We had the procedure Wednesday morning and had results by 4.30pm on the Friday. The CVS or Amnio is a diagnostic test, the results are the results. The Harmony and other Non Invasive Tests (NIPT) are very good screening tests, very accurate. Do you know why your risk is 1:67? High NT measurement? Bloods? A combination? Ours were a combination. Our result was clear and honestly I still don't know what decision we would have made it our little one had Downs Syndrome. I was very torn on it.

SarahOoo · 13/01/2017 12:25

Johno85 pleased for you!

Snowflakes1122 · 13/01/2017 12:25

Johno85 So pleased your results are in and so good!
That's lovely you know you're having a boy too Smile

Dch0728 · 13/01/2017 18:11

Hi SarahOoo its a combination. Need to check with the dr later on what to do since they diagnosed me also for placental insufficiency. When i found out yesterday as if my world is about to collapsed. CVS or amnio will help appease my mind right? Just for accuracy purposes. What about level 2 ultrasound can this be an option? Thanks for sharing your story. Lets just hope for the best in everything.

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