Hospital tested for Downs even though I said no...

[Lyndsey8880]

Hi all,
Its been a day!!! Saw on my app yesterday I have low Papp-a so been expecting a call about my combined test results.
I had requested edwards and patau, same as I did with my daughter 5 years ago...
The screening midwife called and said I have some good news, and a confession..
The good news is your screening for edwards and patau came back as low risk. The confession is that you were tested for Downs. Im so sorry, I know you didn't request this. The paperwork was filled correctly but the lab went on autopilot and tested all 3. So now, do you want to know the Downs result and the next steps, or would you rather not know as requested..
Clearly she'd already given me the answer by talking about next steps..
Turns out my test came back as 1 in 25 for Downs.
I didn't want to know, and now im in the situation where I choose to have NIPT test to be more sure, or just try and ignore the fact that they've given me these results.
Been a stressful day!!

When you make statements against the norm (ie. Having all three tests) its natural to be curious about reasons.

HTH

outside of the cock up with the testing. I had a much higher risk than you but I said to myself would I do anything different if I knew and my answer was no. I did read up alot but to be honest I was glad I didn't have the needle test (which was the only one at that time as it carried an increased risk of spontaneous abortion and in the end I was a v high risk pg and delivered at 31 weeks - no downs

Hi OP. I had the same result 1:25. I had the private blood test at a private clinic (wasn't available on NHS). I was convinced I would be the 1 in 25 as both my mum and nana had babies with Downs Syndrome. My lovely brother with DS is 35 now. The blood test came back negative. I would have carried on regardless but I did want to be prepared.

I can understand how this has upset you. Wishing you all the best ❤️

I think we’re so lucky to have these tests, to be honest. To enable us to be armed with information from the off.

I don’t really understand why anyone wouldn’t want that information. No one is forcing any kind of decision on the back of it, it’s literally just preparing by arming yourself with the facts.

I have a relative with DS and I remember the utter shock and devastation of her parents and grandparents when she was born (no testing, no advanced warning at all). She is an adored child - but I also know how challenging her life has been.

You're damn right I took all the tests I could get when I was pregnant.

Not true. I’m a special school teacher and have taught two children with Trisomy 13, neither had the mosaic condition. Both boys had very complex learning, physical and health needs but they were certainly not ‘incompatible with life.’ One of the children did sadly pass away aged ten, the other is currently seven and as far as I know doing well. It may once have been true that Trisomy 13 was generally fatal but like most genetic conditions not every baby is effected in the same way and medicine advances all the time so conditions that were once ‘incompatible with life’ don’t always remain so. Obviously that’s not to say that it isn’t a complex condition and it is true the vast majority of babies with it will die soon after birth or within the first year but there are still children who do defy the odds and there are even cases of people with full trisomy 13 living into at least their 30s.

If your baby has down's syndrome, then they have it. You either find out now or at birth. Not finding out now won't change anything, but it's ok not to find out if you don't want to. But if you would keep the pregnancy anyway, why not find out? It's like finding out they have a clubbed foot, it doesn't matter but they still have the clubbed foot whether you find out in pregnancy or at birth, but you have more tike to prepare if you find out in advance

I think that's appalling OP and I'm quite surprised at these replies. I didn't want to know either and I'd have been furious if they'd gone ahead and done it anyway.

I know someone who lost a perfectly healthy baby through amnio. I’d sleep on it op and go with your gut.

Yep.
This.

What does 'HTH' mean?

Even if you didn't want to terminate due to DS I don't get why you wouldn't want to find out and be prepared if they do have it.

This. My son had a friend at preschool who had Edwards syndrome. She lived to be at least 10 years old, we lost touch after that.

FFS people it is Down Syndrome NOT DOWNS!!! For the love of God please stop calling it DOWNS!!

No it’s not! It really isn’t!

I shouldn't have commented. I meant to be reassuring but as you say, it's more complicated. OP chose not to have the test and it must be troubling to have been told that there is even a small chance of Downs Syndrome.

The syndrome was originally known as "Down's syndrome" after the scientist who first identified it. The name has very recently become Americanised to "Down syndrome", nothing insensitive or offensive about it, unless you consider Americanisation offensive (which I am inclined to).

I requested no to testing for Downs because a) I knew I'd have the child either way,
b) my sibling was told they had a 1 in 3 chance of Downs and spent the whole pregnancy worrying - the child was fine.
C) I was an older mother and after researching how NIPT risk of Downs was calculated I realised that I'd always be "high risk" simply due to age factor.

If they'd accidentally tested me for Downs I'd have complained, and not taken any further steps as my first reason still stands.

Yes, you'd think it was obvious!

I feel some people on this thread are not thinking about the reasons why some of us choose not to be tested for Down’s Syndrome.
Everyone is different, I was higher risk due to age, and made the choice not to be tested. I did not want to be put in the position of needing to consider the further amnio test, or when certain having to face the decision whether to continue with the pregnancy. For me it was mentally much better to ‘wait and see’ rather than being forced to struggle with the dilemma of what was best, or making a decision that I later regretted.
I really feel for the OP that she has now been put in this position of needing to make difficult decisions to gain clarity, it’s unforgivable. The mistake has greatly increased her anxiety for the rest of her pregnancy. I feel very angry on her behalf.

I’d want to do the nipt for reassurance
or to prepare myself

Okay, walk me through this…
you do get tested for DS. It’s likely that baby has it. You aren’t terminating, so the baby will be born regardless and be loved and cared for.
is it better that
A) you know ahead of time. You plan, do reading, learn about additional care needs. Baby is given more attention on arrival to check for complications etc.
B) you go in blind folded and unaware that the child has DS. great. Now the baby, who as you say, will be born regardless, might even go undetected for some time at birth. Higher risk to their life ( as newborns aren’t always clear for DS, but can have heart defects etc requiring immediate attention) and now you are underprepared.
I really don’t understand this mentality of A.

🙄

This is totally out of order. If you didn’t consent to a test for Down syndrome it shouldn’t have been done.

This. What does it matter to you if you weren't testing for it anyway.