Hold my hand - been told I'm high risk for Down's syndrome

[PenguinsDontEatPancakes]

Got told today that my combined NT and bloods have come back as 1/100 for the risk of Down's syndrome. I honestly don't know what we would do if it was confirmed (this is DC3 and not had to confront this before), but I know that I can't spend the next six months tying myself in knots about it and so I'm going in for an amnio at the end of the week.

Please could some nice people on here hold my hand? It sounds trivial, but I also really want someone to reassure me about the procedure itself. I am a really nervous patient and already feel scared!

sorry - e-verything fine

At the local hospital Saggy. We are a long way from London or I'd have considered private TBH. Thank you for that information, I'll take it up with the consultant if she says she can't reach the fluid and see what she says.

I complained to my local hospital about being made to wait for amnio when I could have had a CVS straight away. The risk of needing a repeat was the reason they gave. after the complaint.
Mind you, with "higher than 1 in 5" results I'd have taken the retest over the wait anyway!

I really think they present these "high" risk odds to you as if it is all doom and gloom and terrible news. 1/00 is not a high risk, it's a pretty low risk. I had "high risks" of 1/160 and then 1/130 with my pregnancies and the MW in both cases made me feel like it was of course a terrible shock and I would be terribly upset. When I looked into it, I discovered that these tests are not all that accurate anyway, and can be affected by getting your dates slightly wrong and various other factors. And remember that at age 40 the background i.e. normal level of risk of DS is 1/100 anyway.

Good luck with everything.

Thanks Eye. Yes, I agree. They do seem obsessed with saying you are 'high risk' not with saying 'it is 99% you are fine'. I understand that they have to present the information, but it does seem very negative.

Do you know what the dates being wrong does to the tests? I'm interested because my dates are wrong. It is borderline immaculate conception for me to have conceived when they say I did, but my dates fit with when we actually had had sex and when I had ovulation symptoms. So they think I'm about a week further along than I do.

I wonder if the reason they make so much of these results is because for many people, a problem is a problem IYSWIM. Many people will terminate, so its better to get things confirmed more quickly?

It's interesting to see what numbers people were given and how they are still classed as High Risk - as another poster has said, when the numbers are given in the form of percentages everything looks much more positive.

What do they actually check for in the bloods which they use to create their fraction of risk? My results came back as 1:90'000

Good luck for Thursday, I hope you get the result you want.

Penguins, I'm afraid I can't remember the exact details as my last one was 4 years ago now, but I was like you in that I knew when I had conceived could not be when they said - it was a week earlier in my case. I think part of the test involves levels of certain chemicals which change through your pregnancy, so they are looking to see if those levels are right for your dates. I asked if my results would be different if my dates had been what I believed them to be, and they said yes, you would be out of the "high risk" category.

I can't guarantee it will be the same for you - however it is something worth knowing about and maybe even asking if you can find a HCP who can understand what you're trying to clarify. My midwife didn't know what I was on about (the same midwife had never heard of toxoplasmosis, so she was a bit clueless and I am not MW-bashing in general). However I was automatically given an amnio appt - which I didn't want, or go through with - but I did get as far as turning up and was able to discuss all this with the doctors and nurses there.

Thanks. I am going to talk it all through with the consultant on Thursday then. I am sure I am around a week behind what they think. And it is only the bloods that make me high risk (the NT measurement was normal).

I tried asking some of these questions to the midwives and, whilst lovely, they didn't really know anything except the 1/100 final number spat out by the system.

EyeOfNewt - I experienced a similar attitude when I was given my test results. I was 40 (nearly 41) at the time and the odds (1/128 I think) were actually slightly better odds than for my age alone, but I got the news re high risk in a phone call and it was presented as Terribly Bad News. To make things worse, I took the phone call at my desk at work and I asked the MW on the phone to wait until I had got away from my desk to find somewhere private (it was a massive open-plan office) and she kept on talking anyway and I was really upset - utterly horrible!

DP was away abroad that week and then I had the news that my dad was ill and any ability I had to deal with the test results calmly and rationally just left me.

That's interesting that you turned up for your amnio appt and had a discussion but didn't go through with it as we had a similar attitude to it. We went to both appointments with the view that it was first and foremost a discussion about the risks and health of the baby, and to only go ahead with any testing if it felt like it was the right thing to do after the discussion.

Penguins I hope you get all the information and help you need at your consultant appt. I'm sure it will be easier to make a decision, or to feel more comfortable about the testing once you've had your questions and concerns addressed. The consultant we saw put us at ease so much that the procedure wasn't nearly as traumatic as I'd feared.

How did you get on today? I only just saw that you asked me a question about my hormone levels - sorry. I had low Papp-a levels apparently. I think they were 0.38, which is fairly borderline low risk. I only have a very layman's understanding of what this means, but apparently at 12 weeks when they do the test, the placenta should be taking over and making these hormones, so a low level might be an indication that the placenta is not developing properly. So even thought my CVS was negative, they still wanted to keep an eye on my growth. My son was 4lb 12oz at birth (36+2), so small but not dangerously so. He spent a few days on a glucose drip as he struggled to regulate his blood sugar. Once we took him home he was fine though and has had no further health problems.

I'm pregnant again now and measuring at the 95th centile, so it was just one of those random things in my first pregnancy with no explanation.

Good luck today. I hope you get a good result.

Hi, sorry, I started two different threads and realised I only updated one.

The appointment was yesterday. My bloods were the only thing throwing things out. My Pappa-a was actually a little bit higher than normal, but apparently nothing to worry about. It was the HCG sending things out of whack as it's 4x higher than normal. No wonder I've been feeling so shit this pregnancy!

I couldn't get any sense about whether being 12 weeks rather than 13 would have made those numbers look better or worse (I wasn't looking for a stat, but I'd like to have known what direction the numbers would have moved in).

The procedure itself was fine. The worst bit was the needle coming out as the uterus is obviously a very strong muscle and gripped onto it, so there was a bit of tugging.

Results are on Tuesday. The nurse was pretty happy that, with no soft markers (that they can measure at this early stage) showing up, a healthy growth rate since the last scan, and only one element of the test throwing my stats out, it's all looking as good as it can at this stage. I've been told that, if they are clear, I go back to being a normal low risk pregnancy, so presumably they are happy that there are no growth complications for my levels.

Thank you Hobbes for answering me. I am glad to hear that your son is well and I hope everything goes well with your current pregnancy. 4lb 12oz sounds tiny to me as both of mine have been over 8lbs and well overdue!

I was 1:2. I was petrified and felt very confused about who I was and what I stood for. I had a cvs and there were no issues at all. You are in the middle of a worrying period, time will pass and you will get more information.

Thanks Dotty. I am glad things worked out well for you.

I do already feel better now I understand that it is one element of my bloods that was causing the issue. That makes me feel more positive than lots of things pointing slightly in the wrong direction. No idea if that is logical, but it's helping me through the long wait until Tuesday.

It will be a long wait and there is nothing you can do about the results. You are pregnant and you will soon find out the chromosomal health of your baby. It was a hideous time, not least because I'd really wanted to be pregnant but wasn't sure I could continue if my son had had edwards or downs. I still don't know the answer to that and am very grateful that i never had to find out. I had some fantastic forum support as i was very teary. It really helped, so keep on talking and soothing yourself here as it's easier than talking about it endlessly in RL.

There was no judging, just hand holding and cups of virtual tea.

I second exactly what Dotty says. This is a great place to talk. When it gets too much you can just switch the computer off!
We/I decided in the end that we would terminate for Edwards/Pataus, because the prognosis is very very bad, but not for Downs. And it turns out our DD does have Down's. But its very much your own choice and nobody can make it for you. Its lovely and non judgemental here, a great place to thrash things out. Fingers still crossed for you. xxx

Thank you both.

We would terminate for Edwards or Pataus. Down's is incredibly difficult. In my previous two pregnancies I would have said no way. But this is an unplanned third and, unlike previous times, DH is now working away for part of the week (and will be long term). I already feel very stretched and I don't know how I would cope with the extra demands (whilst recognising that that is ridiculous because even if we get the all clear on these tests, any other disabilities could be diagnosed after birth). I hope that it is not a decision I need to make, because it will be incredibly, incredibly difficult to do so. I don't think I can even begin to process it unless it is a real situation rather than a hypothetical one.

I actually don't feel as bad waiting as I thought I would. I think because our risk is really quite low-high, if that makes sense. I'm not dealing with 1/10. I'm dealing with 99% everything is ok. So it's more a background anxiousness than an all consuming stressful wait.

Glad you are feeling positive.

A friend at work had this recently, she got high risk of 1:36 and she is only young, 26. had the cvs and has had the all clear.

Hope all will turn out fine for you, the stats are very much in your favour.

I was 37 with 1:2. Which now feels young! Very glad to hear that you are not finding the wait stressful as this is a time to look after yourself. You will know what the right decision is for you, if you have to make it and you know your families strengths and weaknesses. Do something nice this weekend and have a little fun, if you can. There's nothing to be done or thought about for a few days.

Thanks both.

It's not exactly that it isn't stressful, more that it's like waiting for an exam result. I'm kind of getting on with other things, and logic tells me that it's likely to be ok. But it's there in the background niggling a bit when you stop to think about it.

Results in early. All clear on the fast results.

Congratulations penguins. Now you can enjoy the rest of the pregnancy.

So pleased for you x

Thanks everyone. I really appreciate the support on here.