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Waiting on harmony results

(20 Posts)
Ruth1988 Tue 07-Nov-17 09:32:26

Hi all!
Sorry I'm new to this and have never posted anywhere like this but feel I'm slowly going mad!!!!!!

We have been trying for number 2 (have a 3yr old daughter) since Xmas last year. My first pregnancy was text book and I loved every minute of it! So was a massive shock when in April we had a miscarriage (baby was 8-9 weeks) unfortunately my body worked a bit quick when I went for the scrape and I ended up going into labour and giving birth to my tiny tiny baby. I really struggled to get over what had happened (best friend at work 4weeks behind me so have been watching her bump grow and kick etc etc) I ended up managing to get pregnant again in August and was so happy but had early bleeding so internal scans - didn't dare let myself attach convinced it would go wrong. Finally after 12week scan told all looked well started to dare myself to feel happy and then bam got a phone call saying we were high risk for downs syndrome 1:101 due to low papp-a and high hcg. Devastated was not the word! Couldn't bear the risk with the nhs test of miscarriage after last time. Paid for a harmony test which blood was taken on Wednesday and I'm a wreck!
I don't even like to acknowledge my pregnancy or see people who we had told for fear they will want to talk about how happy it is etc etc.
Oh and to make matters worse sister in law is pregnant too! Due 3weeks before me!

Sorry for the ramble but I just needed to get that off my chest!

HazyDays81 Tue 07-Nov-17 10:27:41

Hi Ruth. So sorry to hear you are going through this. I know how hard it is. After my nuchal scan I came back with high risk Down’s 1:121. We also had the Harmony test as I couldn’t stand the uncertainty of not knowing. Thankfully I came back low risk but it was an agonising wait. You have less than a 1% chance which is still very low. Fingers crossed you’ll get your results very soon & you’ll be able to relax & enjoy the rest of your pregnancy x

TheUrbanBush Tue 07-Nov-17 10:32:26

What a lot to go through. Fingers crossed for your results. My nuchal and bloods gave us a 1:10 chance of Downs, the NHS seemed to imply there was almost definitely something v wrong. So we had Harmony done at a private clinic and it came back all clear. The rest of the pregnancy was text book and he is it a very healthy and happy little boy.

hopeful31yrs Tue 07-Nov-17 10:43:29

Had the same - NT was 4.1mm at 12 weeks. 1:5 risk of chromosomal disorder so went and had NIFTY that evening. All was fine and got results just a week later (that was with a delay). I personally found googling was reassuring to me - lots of b

hopeful31yrs Tue 07-Nov-17 10:44:14

Lots of good outcomes there and better than what was expected!

Ruth1988 Tue 07-Nov-17 11:03:10

Thank you for all your replies.
Hazydays and urbanbush can I ask how long your harmony results took to come back please? I was in such a daze I can't remember what we got told 7 days or 7working days? Some people are saying 5days?

Did you all feel reassured after you got your results and they were low risk?
I'm so scared and to be honest I don't know if it's normal how much I have distanced myself from the pregnancy or if I need to speak to someone?
I'm scared that even if we get low risk results I will just start concentrating on the low papp-a as another worry?
I thought I was ready to be pregnant again but I'm now doubting if I got over the miscarriage and that's why I'm struggling so much with this now?

Duckstar Tue 07-Nov-17 11:11:34

I had a miscarriage between Dc1 and DC2. To be honest even after the harmony test (which I had at 10 weeks). I was more anxious about something going wrong all through pregnancy. A bit like you I got pregnant very quickly with my first and pregnancy was fine. So, while it sounds silly, the miscarriage was such a shock. Talk to people/midwife about your concerns. It might not make them go away, but I found eased them.

TheUrbanBush Tue 07-Nov-17 16:20:57

My Harmony results took a while: Weds test for Fri results. But that was a couple of years ago, I think there are more labs that do them now so the back log and travel distance is less.

HazyDays81 Wed 08-Nov-17 17:08:04

Have you had your results back yet OP? My blood was taken on Weds evening but the lab didn’t receive them until Mon. I chased for results & got them on Friday so mine took 7 working days. I felt a huge sense of relief hearing I was low risk. To be honest it did take a few days for me to accept it as I had all the worst case scenarios going round in my head & felt very emotional. Like another poster said I did find comfort in looking at other posts on here. I was also referred to www.arc-uk.org which may offer some support/advice if you want to chat to someone impartial. Really hope you get your results soon & it puts your mind at rest x

UnderTheF1oorboards Wed 08-Nov-17 23:05:31

ARC are not impartial. They advise about termination, not about what life with Downs is like. Not impartial. If the NIPT is positive (and it doesn't sound like it will be) make sure you get info from lots of places to get a rounded picture.

Good luck OP x.

DontShootMeDown Thu 09-Nov-17 12:03:57

ARC are an amazing resource on info about testing. They knew more about what results mean than anyone else I spoke to. Obviously if you get a diagnosis you need to do another type of research but at the testing stage they are the best.

Ruth1988 Thu 09-Nov-17 20:30:20

Thank you so much to everyone for replying! So sorry for my delay I've just been so overcome since Tuesday getting the results completely forgot about my post!!!!!

So! It was good news we were given a less than 1 in 10,000 chance of all three tristomys.

When I was desperately searching for some reassurance online before getting my results I found little posts with all the details in one place so below are all my measurements etc

12W + 4D
NT 1.90mm
HCG 2.690
Papp-a 0.400
Risk of 1 in 101 for Tr21

Obviously the result won't be the same for everyone who has the same test results as me but I hope this can be of some comfort to even just one person whilst your waiting for results

Thank you so much for all the support xx

HazyDays81 Fri 10-Nov-17 07:20:52

Congrats on your results, what a relief! Hope you can now relax & enjoy your pregnancy smile x

Lovelily2016 Fri 10-Nov-17 19:17:17

Firstly congratulations on your pregnancy! Secondly I'm glad you have now got your results. I myself had a 1 in 99 chance of our baby having down syndrome (first baby and I was aged 28) we have the nipt also and waited 3 days for our results. We had a positive test for down syndrome. If course it was a huge shock but I decided the best thing to do was talk to others who had a child with down syndrome and find out what life is really like. There is the most wonderful blog called "don't be sorry" written by a woman named Sarah and she tells it as it is. I'm so glad I done this as if I had of listened to doctors and others who actually didn't know much about life with down syndrome I wouldn't have my beautiful, funny, cheeky and perfect little girl (now aged 2) doen syndrome is only a tiny part of her and is does not define her. If you know of anyone else going through this I would highly recommend directing them to blogs, local support groups and also the DSA. This was yhey will get a real virw of life with down syndrome and they can then make an informed decision.
Good luck with the rest if your pregnancy and congratulations again. X

Dontbesorry Fri 10-Nov-17 19:18:44

I’m so pleased you felt you got the reassurance and the results you wanted Ruth. Hoping I’m not speaking out of turn, but the general tone here from most of you, is that having a positive result of DS, would have been devastating. Is that right? My little boy is called Oscar. He’s 5 years old and happens to have DS himself. Like you, before we had him, my preconceived idea, was that this was going to be the worst news imaginable. But the reality is so far removed from how my thoughts panned out back then. I’m not here to tell of you how to think or feel but if any of you would like to hear about my family, a family of 5 (three children 5 and under) one of whom happens to have Down syndrome, please do look up my page on Facebook. It’s called “Don’t Be Sorry”... and it’s named that because there really isn’t anything to be sorry about. Listening to your comments, reminds me of how DS used to play out in my mind... wishing that “what a relief” wasn’t the first thing out of people’s mouths when a women gets a clear result, preferring people to perhaps say “it wouldn’t have been the end of the world”, “It would have been ok if our baby had DS” “We would have been fine”... because promise you would have been
X

Happyflower74 Fri 10-Nov-17 19:56:32

Congratulations on your pregnancy! Wishing you peace and health over the next few months! A number of people have mentioned ARC as a great resource for impartial information. I’d have to strongly disagree with this. They were formally known as Support After Termination for Abnormality and little has changed. Take a look at their corporate donors - a long list of drug companies that sell NIPT and private clinics offering it. Their forum is only for women who have had terminations and there is no support for women wishing to continue their pregnancies. If you want to know about a condition contact charities for that condition directly. ARC are not experts in the conditions being tested for. For information about DS contact the Downs Syndrome Association or have a look at this fab website www.positiveaboutdownsyndrome.co.uk for an idea of what it is like to love a child with Downs Syndrome.

pinkpip100 Fri 10-Nov-17 20:00:46

Glad you have had the reassurance you needed OP and I hope you can relax and enjoy the rest of your pregnancy. Just in case someone else in a similar situation is reading this thread, I just wanted to echo the post above. I have a 4 year old daughter with down syndrome and in all honesty life with her is great. Yes, it's slightly more complicated than life with a 'typical' child, but most of the time her diagnosis has little or no impact on our (admittedly already slightly chaotic!) family. Her siblings adore her and we still do all of the things we did before she came along (I've carried on working, we still go camping, to festivals, on holiday, days out etc etc). She is a funny, bright and strong minded 4 year old who loves going to school, dancing, swimming and reading. Although the news that your baby has (or may have) ds may feel completely devastating at the moment, the reality for the majority of people I know (with children of all different ages) is far more positive than you imagine. The website www.positiveaboutdownsyndrome.co.uk is a great resource if you want more info.

Ruth1988 Sun 12-Nov-17 18:59:12

Thank you all for your replies, sorry I can't remember all your names!

I am sorry if you felt that my post was about how negative it would be. I suppose it was more a fear of the unknown and fear of the associated health implications which my baby could have rather than a fear of downs syndrome it's self if that makes sense?
Sorry if I caused offence to anyone

UnderTheF1oorboards Sun 12-Nov-17 22:21:35

No offence caused OP, I'm sure flowers. When DS mamas (self included) pop up on these threads its to reassure anyone facing a positive diagnosis that the future holds just as much love and fulfillment; and no more risk; as with any child. I wish societal (and medical) prejudice had caught up with that reality. Good luck with the rest of your pregnancy.

Lovelily2016 Sun 12-Nov-17 23:37:15

Ruth1988 no need to say sorry at all. Of course it's a scary and worrying time and the unknown is always scary. I myself as any other parents with a child who has down syndrome would just want to reassure you it's ok and to point you in the direction of advice and support should you need it. I really hope you enjoy the rest of your pregnancy and congratulations again xx

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