Screening shows high risk for Down's.

[OctopusBreath]

And I have no idea what to do.
Unexpected pregnancy, I have two teenagers and will be 40 when the child is born. Am nearly 15 weeks now and I really don't know whether to take the risk of having an amnio, and if I do and it comes back that the child does have Down's, what difference that will make.
Does anyone have any experience of this please? They said 1 in 78 chance...

I really don't know whether to take the risk of having an amnio, and if I do and it comes back that the child does have Down's, what difference that will make

It means the decisions you make will be as informed as possible.

Assume this is from the combined screening @OctopusBreath? It is known to produce a fair share of false positives since your age would automatically be contributing to this assessment. Have you not been offered NIPT following your high risk results? It's a much more accurate screening that tests the baby's DNA and is usually offered on the NHS if you come out as high risk on the combined screening. It's non-invasive but just a much more accurate screening tool.

Yes the combined screening stardust. The midwife sent me lots of stuff to read, but you're right, NIPT sounds like a better option.
It's a good question about why I had the test... I think I wanted to know for sure about the other conditiona

Have you been given the contact details for ARC? they can help you talk through the questions you have and are asking yourself.

Do you have a supportive partner?

www.arc-uk.org

Sorry fat fingers! I wanted to know about the risk factors for the other conditions because they might mean that the child is going to be in a lot of pain.

I also second the NIPT test that might be a better option for you than an amnio right away if you are unsure how to proceed.

I personally think I'd have the extra tests because I could then make an informed decision about what I'd do.

Well I had a much higher risk than you and had CVS as I knew I didn't have the capacity to care for a child with Down syndrome.

But if you feel you do, then no need for more screening. Best of luck either way OP

I had a high 'risk' (hate that term) from the combined screening and went on to have the NIPTY because I wasn't prepared to 'risk' the amino. NIPTY confirmed that the baby had Down's Syndrome.

That was 7 years ago now 😱 so I'm happy to chat about the first 6 years of raising a child with DS if that's any help to you?

Gentle hugs for now, it's a horrid time - not knowing is far, far worse than knowing! If you have any questions, just want to chat, rant, whatever then I'm happy to listen :)

I had the screening tests done and my result was much higher. The midwife said the tests are old and not very accurate and the result may just be because I'm a little older (was 36 at the time of test). I was offered a NIPT and an amnio. The NIPT is just another blood test and is 99.9% accurate. The amnio is an increase of a miscarriage and/or infection but the risk is apparently much lower than it used to be. I went with the NIPT and the results came back negative, it was a huge relief. The only reason they don't offer the NIPT at the outset is because of the cost.
You can of course do nothing, but the NIPT is least invasive and safest if you are unsure.

I’ve been there, over 40 and similar risk percentage. Your age will affect it quite considerably. This was pre NIPT and I decided not to have the amnio. For me I didn’t want to risk a mc and we decided that we’d be ok whatever the outcome. It’s a difficult decision though and I second that ARC are fantastic for talking it through. Wishing you all the best.

Thank you all. You've made me feel better. DownRightAmazing thanks especially to you for replying... I'm away at the moment but I'll message you when I'm home if that's okay? It's really kind of you to offer this.

I had an amniocentesis at 37, the result was negative, baby was fine. They use a needle to extract the fluid, in my case it was very straightforward, not at all traumatic. I would have been prepared to abort as being older parents, I wouldn't have wanted to create a burden in later life for our other child. Don't have the test unless you are prepared to act on the result.

I had this too& she said ‘it will be your age’ so I paid for a harmony test at £400+ (which I couldn’t afford) which came back snorting like 1 in10,000 so negative. I was 42 when I gave birth & she’s v healthy!

Sorry, forgot to add - I pack d for the blood test as I was scared of the risks of the amino

Of course, anytime at all. I remember very clearly being where you are and being terrified. Completely normal. When we had our result confirmed I cried so much!!!

I found support from lots of strong women when I was pregnant and in the early months and I always look for opportunities to pay it forward

I was 40, risk with ds2 came back 1:23. I had the amnio because I knew I'd fret about it for the rest of the pregnancy and I wanted an answer one way or another.

I wouldn't have terminated for Down Syndrome without other serious comorbidities so I know a lot of people would find my decision illogical, but such are we as humans.

The procedure was fine. Ds2 does not have Down Syndrome or other chromosomal abnormalities. Rest of the pregnancy was straightforward.

That was 9 years ago when NIPT wasn't really an option that I was made aware of. I would have paid for it if I could have afforded it, so it's worth considering if it's an alternative for you.

For what it's worth, my recall letter just said "higher risk" so I didn't know my exact numbers going into the consultation - just that they were over the 1:150 cut off. I'd already decided that I would be happy enough with a 1 in 50 chance since that didn't seem all that high to me in the scheme of things, so 1:78 would have been a good outcome for me going by that reasoning. Much more likely than not to all be well.

I would definitely have NIPT. I got my results back within 4 days.

Well then don’t post your opinion at all. Really how do you think that post might make some people feel? You could just say I wouldn’t do it but saying it’s a horrible thing to do IS a judgement whether you say it is or not.

I had the amnio, but wouldnt have aborted. But knowing was being able to prepare ourselves mentally before she was born.
At the time I was 34 and risk showed as 1 in 60. She didnt have DS and is now 24 and is an OT working with children with DS and other SEN

Thanks all who have posted their experiences- It does really help. I really didn't give enough consideration to having these tests in the first place... I just agreed because it seemed like the thing to do.

Even if you would continue a pregnancy with a baby with DS, it’s worth having the test so that, if it
comes back positive, the doctors can check things like the heart more closely and everyone’s prepared if there’s a problem that needs to be dealt with soon after birth.

FWIW, the combined test is notoriously unreliable. Mine came back low risk, and I now have an 8-year-old with DS. She’s gorgeous and we’re completely used to it now, but it was definitely a shock!

There was a lot of judgement in that statement.

Women have to consider a lot of things if they get a diagnosis of DS. Their own resources both physical and financial to raise the child. The impact on any siblings. Long term plans for care when the child grows up etc.