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!!

I know of a nine year old with Edward's syndrome. This is why it annoys me when people talk with such authority that it is fatal.

Sorry, I've missed where someone said that?

I don’t get what you’re so bothered about. Yes the testing was in error which is not ideal but mistakes happen. You didn’t have to find out the result. As regards the next testing, you presumably were prepared to assume whatever risk that the baby has Downs when you decided you didn’t want the testing.

I had the blood test when you had to have it privately because the nuchal scan showed a high risk of Down syndrome. I did this so that I could be prepared and understand how to support my baby in the best way.
If you haven't had the blood test, I recommend it.

At least two people have. Dammit88 is absolutely right to reinforce that it's just a blood test.

Thank you; I apologise - you're absolutely right.

I agree it's important to be clear the test itself isn't a risk.

Reading people say it, momentarily made me doubt myself if I'd put mine at risk, having had the blood test. (Baby brain even now, three years on 😂.)

Give Antinatal Research and Choices a call tomorrow. https://www.arc-uk.org/
They have a free helpline and can talk you though all your options and the pro, cons and considerations for each kind of testing.

They were so amazing when I was referred for a CVS test. Our baby had Edward's syndrome and didn't make it to birth, but I still remember the kindness of this charity and how much they helped through such a difficult time.

This makes no odds to you. Before the test you knew there was a chance of Downs syndrome and after the phone call you still know there is risk.

I think this, logically. But emotionally I do think it would make a difference and I can’t articulate why.

Like others have said I get you didn’t request the test and it was done in error, but it’s unusual to just say no to 1. Surely if you didn’t request it you don’t mind whether the child has DS and would have continued the pregnancy. I’m not sure what the issue is… 1 in 25 is still low. Mistakes happen by you declining the test you already kind of accepted that risk.

Like others have said I get you didn’t request the test and it was done in error, but it’s unusual to just say no to 1. Surely if you didn’t request it you don’t mind whether the child has DS and would have continued the pregnancy. I’m not sure what the issue is… 1 in 25 is still low. Mistakes happen by you declining the test you already kind of accepted that risk.

Because she CHOSE not to. Nobody's business why.

It’s equally correct to say “Down Syndrome” or “Down’s Syndrome” - names after a Mr Down. There is nothing offensive about using “Down’s” as an abbreviation anymore than saying “Edward’s”
or “Patau’s”.

It’s equally correct to say “Down Syndrome” or “Down’s Syndrome” - names after a Mr Down. There is nothing offensive about using “Down’s” as an abbreviation anymore than saying “Edward’s”
or “Patau’s”.

It’s equally correct to say “Down Syndrome” or “Down’s Syndrome” - names after a Mr Down. There is nothing offensive about using “Down’s” as an abbreviation anymore than saying “Edward’s”
or “Patau’s”.

The nurse referred to next steps which inferred that there was a higher risk indicated in the results. It is one thing to decide not to be tested and another to not ask for the results once it’s indicated that something may have been found. To be honest, I would think this was obvious.

That's really callous and rather superficial, isn't it?

Who on earth thinks 'oh, I don't mind if my child has a condition that might mean they die before birth, die shortly after birth, have to undergo painful surgeries'? I know plenty of people who have Down's Syndrome who have wonderful, happy lives, but it is not normal to think that make up for all the babies who don't make it or who have a really hard time.

Why can’t you have the harmony test? I had this, it poses no risk to baby and has 99% accuracy.

They don’t always live very long either!

It was a mistake. We are all human.
She asked is you wanted the result and you said yes. What more do you want them to do? Why didn’t you say no if you don’t want the result, and didn’t test for it because you didn’t want any additional options for screening:diagnosis? If you’re not bothered just leave it and you can see if your baby needs any additional support after they are born

Also, remember your baby is no more likely to have DS after this result than they were before the test. Nothing has changed for your baby.

There is no risk to the preg doing a harmony test or similar

if the result makes not a diff you could say why find out

equally knowledge is power - so if turns out the test does show Down syndrome then you can prepare /counselling /extra scans and know need extra support at birth

But not wanting to be tested, and therefore plan for, indicates she doesn't think its a big deal?

I don't see how it would imply that?

I think you'd have to be borderline insane to think it 'doesn't matter'.

That is very different from making the difficult decision not to test for it.

That's the whole point of the thread.