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High risk

241 replies

JulieC1981 · 14/01/2020 18:04

I have been told I'm in a high risk for down syndrome.

I have to go back on Thursday for the next blood test.

I'm 38 years old and nearly 18 weeks. So nervous and scared about the results and next steps!

OP posts:
Liveforholidays · 13/06/2020 19:32

@labrinth1 I believe that the quad test is not very accurate at all. If all looked good on the scan I would be hopeful that all is well. I feel very, very lucky to have had a good outcome. I spent a lot of time worrying and waiting for the results was very stressful. Good luck with the waiting, it is truly awful. X

Worried134 · 13/06/2020 19:50

@labrinth1 hello lovely I finally got the results yesterday low risk. I was so happy to finally get them. It was the longest month ever. If it gives u hope I’m 40 x

Am so sorry to hear about ur miscarriage I have experienced it and it’s heartbreaking. Sending u lots of hugs for this long wait x

labrinth1 · 13/06/2020 21:15

@Worried134So glad you got good news. It seems like everyone in this thread had positive NIPT results after their initial screening odds, so I just hope I have the same outcome.

Thank you for your kind words too and @Liveforholidays. Having children seems to be nothing but stress so far! X

Hope2345 · 02/07/2020 20:34

Same thing happened to me. My NT was 2,90mm but the screening test came back as high risk due to my bloods. My hcg was over 4 MoM and due to my age (25) my risk came back as 1:5 for Down syndrome.

I went ahead and got CVS done on Tuesday. Results came back all clear on Today Thursday afternoon. The wait was really horrible and stressful.

I just wanted to share the news that with 1:5 chance the baby can definitely still be free of DS.

I hope all the best for everyone with their results x

Blizy · 05/07/2020 19:53

I was given a 1:6 chance that may baby would have Down syndrome. I didn't have any invasive testing and chose to wait until birth for a diagnosis. Well, I gave birth 3 weeks ago to a perfect little girl who does not have downs or any other genetic disorders.

Missdrifter · 05/07/2020 20:02

@blizy congratulations that’s such wonderful news and thank you for updating this post. I remember we were waiting on our NIPT results at the same time and that your test had unfortunately failed. I am due a c section in just over a week due to baby being breech so will also update this post then.

Blizy · 05/07/2020 22:18

@Missdrifter good luck for your section, hope it's non eventful and the days pass by quickly for you. X

Missdrifter · 06/07/2020 19:24

@Blizy thank you x

FizzingWhizzbee123 · 10/07/2020 23:16

@Blizy Congratulations! Your frustrating experience with test results was heartbreaking. I was hoping you’d come back and update with good news Smile

Paranoidkaty · 15/07/2020 18:30

Just thought I’d update:
I had high risk 1:47 screen NT 2.1mm, hcg 5mom pappa 0.6 age 33.
I had low risk harmony

Liveforholidays · 15/07/2020 19:01

@Paranoidkaty I'm really pleased for you, I was thinking about you just the other day funnily enough and wondering how you were getting on. Hopefully you'll now have some closure and begin to look forward to the birth of your baby. You're midwife is right, you always have to do what is right for you and I'm pleased you followed your gut in the end. Looking forward to hearing news of the birth!

Mrsbitz · 12/08/2020 08:26

Hi, I’ve just had my results back saying I’m a high risk 1-35. I’m 39 at this is my second pregnancy, my first baby is perfect and I had no problems during pregnancy. At the 12w scan they couldn’t get the neck reading so I’ve had to what for quad bloods at 15w I’m now 16w and had this news yesterday. Emotionally very upset and worried, we’ve decided to go for a NiPT privately which is on Friday but I’m now worried about the waiting times for results. And if the results are still high I’d end up having an amino test anyway. Never wrote on a forum before but was up in the night reading all of these.

Liveforholidays · 12/08/2020 09:06

Hi, it really is the most worrying time but take reassurance from the posts on mumsnet. I read literally everything that was to do with high risk results and the majority are OK in the end. The numbers don't help as it seems scarily high chance but that it all that it is, a chance, and chances are that all will be fine. I would be most reassured by a clear scan, especially as I've heard the quad test is wildly inaccurate. I rang ARC who were brilliant, and very reassuring, especially when NIPT came back low risk. I spent most of my pregnancy worrying but actually there was no need and I should have trusted the scans and NIPT.

Mrsbitz · 12/08/2020 10:04

Thanks. It is reassuring reading all of these posts but it still doesn’t stop the what if?? I am hoping things will be fine but the waiting game is torture. I’ve got my little girls 3rd birthday next week and I’m trying not to let it tarnish it but omg it’s so hard. I know my husband is feeling sad about it but actually I don’t think he’s thinking the same as me. I can’t shake it. I’ve got guilt that I’ve done something I shouldn’t have. When we found out we were pregnant it wasn’t unplanned but very quick and with COVID wasn’t the best time. Now I feel guilty I felt like that and should have been over the moon at first. Now we are excited but I’m scared it will all be taken away. Probably thinking the worst case but I’m a bit of a pessimist.

curliegirlie · 12/08/2020 10:46

@Mrsbitz sorry you’re going through such a lot of worry, but whatever the NIPT results, things will be ok, and Down’s syndrome is a slightly different journey from what you may have expected, but ultimately your child will be wonderful, regardless of the number of chromosomes.

My nearly 5 year old, currently playing on her iPad and watching Baby Club (getting very excited about Baby Bear loving porridge, just like she does), had a postnatal diagnosis of DS at a few hours old. It felt like our world had collapsed, as the consultant delivered the diagnosis and reeled out all the related medical complications. But we needn’t have worried - our daughter is wonderful. She was lucky enough not to have heart, bowel or feeding problems (beyond initial difficulties related to her low muscle tone, which meant she struggled to latch on - but ended up breastfeeding for 2.5 years!). She crawled at 14 months, walked at nearly 3, and is a real chatterbox - both verbally and through her great knowledge of Makaton signs. She can sing along to nursery rhymes and loves numbers and counting. She’s my absolute superstar. And I know that a lot of her friends through our local DS charity had heart surgery when very little - obviously horrific for them and their parents at the time - but now a year or two on, are doing brilliantly. Lockdown has seen many of our little crawlers turn into walkers and climbers!

Do have a look at the Down’s syndrome association website (www.downs-Syndrome.org.uk) as they have excellent resources for new and expectant parents. www.positiveaboutdownsyndrone.co.uk also has lots of stories and experiences from parents, grandparents, siblings etc. And there are a couple of really good Facebook blogs - Don’t Be Sorry (about a little boy called Oscar) and I am River, who, for that added bit of exoticism, lives in Tanzania! Both give really good, positive, but honest accounts of bringing up a child with Down’s syndrome.

Take care. I’ll be thinking of you and happy to answer any questions you have.

High risk
curliegirlie · 12/08/2020 10:49

Sorry, that should be....

www.positiveaboutdownsyndrome.co.uk
www.downs-syndrome.org.uk

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