High risk for downs

[Jinxysbaby]

Hi ladies I'm here cause I dnt have no one to talk to had my 13 weeks scan on the 17th may, iv been told I'm 1/91 for having a downs baby, the babys NT was 2.8mm, blood test hcg 1.1 mom nd papp a 0.5 mom. I'm only 33 years old I'm in shock, I decided to have the cvs test which I did on the 19th, now the long wait for results iv never felt so helpless in my life I can't sleep or eat nd today all the worry took over me nd had a panic attack, dnt no how I'm gonna cope with bad news

Nightfall can I just ask wat the markers was to get the 1/3

1 in 11 supposed risk here, refused further testing beyond the scan, baby was healthy and did not have Downs.

good luck

She had a high nuchal measurement - I think 2.8mm at 13 weeks but I could be wrong on that - and I'm sorry I don't knew/don't remember my hormone levels but whatever it was the combined result was 1 in 3. I was petrified, it's normal to be petrified but once we knew for sure it was easier and we were able to get back to looking forwards to her arrival (DC2 for us).

I guess it's just the waiting game now nd Wat will be will be I
Just wanna no

I had a 1/5 chance. Nuchal measurement fine but a high level of (can't remember which) hormone gave us that score. You just have to wait.. remember how it felt, thinking of you

I was in your position this time last year with ds.

I had 1:133 odds so not as high as yours but high for my age (25) and high enough for further testing. We went with a cvs and everything was fine. The wait is so hard though. I don't think we would have terminated but we needed to know.

Some advice for after the cvs that may be helpful for you... I found the rest of my pregnancy quite stressful because of the low Papp a carrying additional risks. I took baby aspirin until 36 weeks and always slept on my left side to help placental function. Apparently baby aspirin is most effective if started by 16 weeks. I asked my consultant about it as no one had mentioned taking it and he said its advice in lots of areas but not all of the country yet although he suspects it will be soon. He wasn't allowed to recommend it to me as its not current advice at that hospital but once I'd bought it up could discuss it. He said there are no concerns about taking its potentially helpful so he would take it in my situation.

Sorry to ramble on but I was in a mess with the lack of info after my cvs and I hope it might be useful xx

Waiting for results is always the worst.

How was u feeling after the cvs my belly still sore and bruised and I lay here praying that my baby is still even Alive, wish baby would give me a hard kick so I would no, I'm 13w 5days no ill defo get some baby aspirin

I have ds who is almost 2 (no special needs) and last year I was 14 weeks pregnant when I was told our baby was not ok.

Our baby had anencepahly so basically had a brain stem but no brain. The baby would either die in my womb or shortly after birth.

I work with children with disabilities and I kept saying to the professionals I can cope with a disabled child. I have seen so many of them do better than expected. But it wasn't a case of disability our baby could not live. It was utterly devestating.

I wish I had been told my baby had Downs because I have a lot of experience of working with children with Downs and would have gone into things with my eyes open.

I would never judge someone who didn't keep a baby with Downs because none of us can tell anyone what they should have to cope with.

I would say though I do feel they offer these tests with no real info to understand the conditions. Downs is not scary. Plenty of people with Downs lead fulfilling lives and are amazing to know and very loving. There are many challenges as well.

Please do not panic. There is support out there whatever happens. Do not let anyone tell you what to do. Just be as well informed as you can be.xx

My niece had DS and is a wonderful person and it upsets me greatly that people that people terminate pregnancy based on this diagnosis

*has not had

Sore, a little crampy, sick and terrified. Do you know when to expect the results?

Yeah definitely look into the baby aspirin thing but I'd speak to your consultant or midwife before taking it just to check its ok for you

Either way I just need to no, it's the not noing that's killing me, my cousin as downs and iv seen her mum struggle for yrs in nd out of hospital worry and stress, looks so scary

Iv been a little crampy keep thinking I'm gonna start bleeding, I had it on Thursday so defo by Tuesday for the first lot I'll ask my midwife next week I'm always there worrying about something

That's how I felt too, like I was about to start my period. But it was fine and more than likely your little one will be fine too.

Did you have the option to find out the sex? Before the high result we weren't going to find out but when it was offered at the cvs we did. I saw it as a positive thing to focus on during the crap iykwim?

You will still love the child unconditionally no matter what. And people with DS are contributing members of society.

I did ask will I found out the sex and they said yesss I'm really looking forward to that would love a boy I have 3 girls. I did call the hospital today cause I feel wet down there they didn't say nothing about losing fluid but I dnt no if it's fluid

We were told at our 20 weeks scan we had a high percentage chance ds would have Edwards syndrome he was diagnosed in utero as having a clubfoot polyhydramosis and a very small chin thankfully he did not have Edwards only a clubfoot (he now has other problems come to light 3 1/2 now though) we decided not to go for further testing and wait it out , I know it's hard but try to think positive ! I know a few mother with dc that have Down syndrome and they are beautiful wonderful children

Well said Tonis2297

That's a choice I'll need to make if and when it comes to it, I'm trying not to this about it just yet

I know it's controversial to say, but a pregnancy should not be terminated because the baby isn't as 'perfect' as you think they should be. And for what it's worth I don't think you have anything to worry about.

I'm still trying to get my head around all these iv got alot of reading Nd thinking to do I need to understand more

When I was pregnant with my first the nuchal fold was 2.2 but the nasal bone was there and our odds were 1:1586, so no amnio or cvs for us. I was 30.

I now have a perfect 5yo who excels at ballet, is achieving academically just what a 5yo should be doing in school, has an incredible sense of humour, a better social life than I do and does the washing up when asked. No heart problems, no gastric problems, no eye problems, no hypotonia and an excellent sleeper.

He does have Downs.

We're lucky, and it hasn't all been completely plain sailing, but no way is Downs something to be scared of and I'd do it again in a heartbeat. Education and health care for children with Downs is light years ahead of what it was 25 years ago and we have so many wonderful people in our lives who we never would have met but for Downs.

As someone who said at 12 weeks pg that I didn't want to raise a disabled child, right now my life couldn't be better. Best of luck to you whichever way it goes.

Do pm me if you want any further info. I'm totally pro-choice btw so no soapbox here .

My niece is blonde haired, blue eyed and happy out. Should she have been deprived of her life? Honestly, you'll be fine, but if not it's OK