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Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Original poster

High risk Down's syndrome

26 replies

Goldenmother · 16/12/2019 15:54

Hi
Just got a phone call from my hospital to tell me I'm high risk I've 1 in 113 for my baby to be born with Down syndrome and 1 chance in 20000 of Edwards syndrome, the hospital have booked me in to have the harmony blood test tomorrow at the UCLH hospital on NHS in London can anyone tell me what happen at this appointment will they just take blood or will there be a scan ? I've google a little bit trying not to can you find out your baby sex someone said on google they did any tips advice would be great and it takes 5-7 days for the results so I don't expect to know before Christmas

OP posts:
Stressedsuzy · 16/12/2019 16:00

I had the harmony. I was scanned first then had the blood taken. I got the results within a week.

Original poster
Goldenmother · 16/12/2019 16:18

Thank you for replying was much said during your scan ? Was you told sex of your baby at this scan? I'm not expecting to be told as they have more important things to be looking out for can I ask was your result accurate? Or did you need to go on and have the more invasive test ?

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Marshy86 · 16/12/2019 16:30

I've had a harmony test at 10 weeks the scan was just to make sure pregnancy was progressed enough for test not to look for anything. From 10 weeks onwards the babies DNA will be in your blood, once age is confirmed by scan they'll take bloods however I think they only tell you sex if you have harmony done privately. My friend had one via hospital but they wouldn't tell her the sex of the baby via nhs. Hope all goes well Thanks

Original poster
Goldenmother · 16/12/2019 16:40

Thank you I'm 13 weeks +4 days I'm not fussed about finding out but thought it may be private people have been told, I've had so many scares in this short space of time bleeds etc and after my 12 week scan last week finally thought everything else would go smoothly

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Amanduh · 16/12/2019 16:58

I’ve just had the Harmony done on the NHS a few weeks ago due to a 1:61 risk due to my blood results. Had a scan first, to check any obvious markers, mine was clear. Then blood test. Results back in 6 days. You could choose to find out the gender if you wanted (we did) and they called with the results a few days later. Thankfully all was ok.

Original poster
Goldenmother · 16/12/2019 17:27

Thank you for Amanduh did they say while doing the scan all seem fine or did you get told every thing when you got the blood results ? Also did they tell you the gender at the scan or again when you got the results ? Many thanks for your help

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Tini17 · 16/12/2019 18:30

Sorry you are going through this :(

Were there any other markers that they picked up on the scan and discussed with you OP?
Did they discuss diagnostic tests (CVS/amnio) as opposed to another screening test (NIPT/Harmony), which won’t give you a definite answer?
You can ask not to find out the sex if you definitely don’t want to know.

TildaTurnip · 16/12/2019 18:33

Nothing was said to me at the scan (they just checked the pregnancy was viable and dates were right).

I had the choice to find out the sex so did. I got results by phone call a week later then by post too.

Amanduh · 16/12/2019 18:42

Nothing about results or sex said at scan, although consultant did say he could see all limbs, nose, etc etc and that was positive, and that he could rule out one condition (had never heard of it, can’t remember exactly what it was.) When full blood results came that is when we were told all was ok, and the gender was told to us then too as we wanted to know. It was a long 6 days!

Aneley · 16/12/2019 18:45

We were 1:130 Down risk and offered NIPT (Safe). Our hospital made it clear that they wouldn't let us know the gender.

MyDcAreMarvel · 16/12/2019 18:45

Sex can be found out from an amino not from the scan.

Original poster
Goldenmother · 16/12/2019 19:11

Thank you all for your answers, I'm having the (safer) test first as I'm not 16 weeks I will have this test tomorrow I'm sure my wait will be longer then 5-7 days as it Christmas so I'm gonna try to not let myself stress to much over the holidays but I guess this is easier said then done I'm also very worried as my uncle was born with Down syndrome so I know it's in my family

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Marshy86 · 16/12/2019 19:13

Hi @Goldenmother ,

So sorry to hear you've been having a bad time, I've been in hospital with HG sickness and continuous bleeding from week 7 to week 13 so can sympathise on that side. I hope everything goes ok and you get results in a speedy time frame x

Original poster
Goldenmother · 16/12/2019 19:38

Thank you this pregnancy seem to be one thing after another I've had bleeds from week 7 so been stressed and worrying about all that finally had my 12 weeks scan and all was ok and then a week later this news I know my pregnancy was a big shock but I'm starting to think is this meant to be with all the scares I've had

OP posts:
MyDcAreMarvel · 16/12/2019 20:24

I'm also very worried as my uncle was born with Down syndrome so I know it's in my family
All that tells you is that your great Aunt did not have an abortion. It in now way increases your chances of having a baby with Down syndrome.

LetsSplashMummy · 16/12/2019 20:52

These are not very high odds - if you were in a room with 112 other people, all with these odds, only one of you would be carrying a child with DS. The cut off for further testing is a really low bar, the vast, vast majority of people called back will have perfectly healthy babies.

It doesn't run in families, in order for a gene to be inherited the people with the condition need to be able to reproduce.

Best of luck, honestly, and congratulations on your baby.

Kennebunkport · 16/12/2019 21:02

In terms of finding out the sex they will not tell you from the scan - nhs or privately. Simply because it's too early to be certain. Generally private clinics don't start sex scans until 16 weeks. The way they can tell you the sex is from the baby's dna in your blood. Privately you can request to have the blood further tested for sex chromosomes, but I think it varies on the nhs. As another poster said, the scan is to check the pregnancy is far enough along to make the testing accurate. I hope everything goes well for you OP.

MrsTiffin · 16/12/2019 22:58

I had the NIPT privately when my test came back as 1 in 19. Took about a week for the results to come through as all clear. I didn't have a scan with the test - I think it varies with where you have it done.

I now have a very lively 11 month old! I hope all goes well for you @Goldenmother

Original poster
Goldenmother · 17/12/2019 06:44

Thank you all for your response it has been reassuring does our age have a big impact in the results as I'm 38

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Liverbird77 · 17/12/2019 09:00

I hope it all works out well for you.
So many people are saying this is funded by the NHS. We are in South Manchester and have to pay ourselves.. £500! We did it with first pregnancy too. Postcode lottery!
I think this should replace the nuchal transparency test for everyone as it's much more accurate!

Original poster
Goldenmother · 17/12/2019 19:19

Had my test today the lady that done the scan we really reassuring she said she couldn't see anything on the scan to suggest any concern and they said they will get me the results before Christmas

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TildaTurnip · 17/12/2019 23:11

Age will impact the 12 week anomaly scan results but not the Harmony results. Glad the scan was positive and that the results will be swiftly back.

MockingJay27 · 18/12/2019 12:50

Sorry you are going through this. Fingers crossed for your results.

Ethellsmum · 18/12/2019 12:58

Just to let you know in my last pregnancy my odds were 1:100 and everything was fine. Fingers crossed everything is ok.

Original poster
Goldenmother · 20/12/2019 19:36

So today I call my results and was told it's low risk I'm so grateful and lucky to be able to get this test in my local NHS Trust

OP posts:
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