Declining screening

[Amber17]

I think I'm fairly convinced about what I'm choosing but I'd appreciate other opinions.
Background: I'm 12 weeks, early 30s, first pregnancy, going for dating scan soon. I work in the medical field and understand risk/statistics well. I've also met plenty of families with children who have life-limiting illnesses.

I don't want the screening bloods that generate a risk prediction for trisomies. Partly on the basis that it's not diagnostic. If it came back as high risk, I wouldn't want CVS or amnio as the risk of miscarriage outweighs the likelihood of me choosing to terminate. If the baby has a condition that's likely to be very life-limiting, I think it would be detectable on the 20w scan (which I'm very happy to have, and am having extra growth scans at 28/32/etc for another reason), so any antenatal planning for extra care needed at delivery can be done.

It seems to be very unusual to decline these tests so I'm keen to know if there's something I haven't thought about?

None of the midwives, sonographers or other medical personnel questioned my decision - screenings are offered, not compulsory.

I would absolutely decline if I was to ever get pregnant again - I don’t think it’s that uncommon. I had a false ‘high’ result for first DS which caused a few weeks of stress and anxiety until everything came back as ‘clear’ and then I pretty much worried for my entire pregnancy about how he would be…he is perfect. I declined screening for my second baby but unfortunately as he had a high NT they told me anyway so I did actually end up having an amniocentesis and also panicked for my entire second pregnancy. DS no. 2 also perfect. It’s worth knowing that they seem to inform you if you have a high NT even if you have declined screening (or at least they do in my trust).

I declined. My DD1 (16) has some sort of genetic syndrome but not identified yet. I wish I'd had the test in case it would help them to have some clue about what it is. But then, she's had whole genomic sequencing and that didn't identify it.

I declined screening with all 4dc. Agreed to ultrasounds only, although not measuring of nuchal fold

Exactly this. I had an older brother who was born alive with a genetic syndrome similar to Edwards, (there was no genetic testing when he was born) who knew nothing apart from misery in his short life.
you’d have to have some extreme views to want to put a poor child through that.

But that’s just it you dont find out at 13wks from the bloods as they have a very high false positive rate. If you terminated based on bloods alone, you’d have a high chance of terminating a perfectly healthy baby. That’s why if you get a positive in bloods, you then have to go on to do an amnio or CVS…and if you don’t want the risk of miscarriage those cause and wouldn’t do those tests there is literally no point in doing the bloods screening.

Thanks, I wasn't expecting so many responses but this has been really useful to see a range of opinions, and see that it's not quite as unusual a decision as I thought - I suppose there's a lot of perception bias in that people who have the screening are talking about their results and those that didn't aren't!
Very interesting to see it's not routine practice in NI.

What about doing tests like the Harmony which are a simple blood test and almost 100% accurate? They are expensive but I think totally worth it.

I declined screening in both pregnancies.

Like others have said, if you would not have an abortion in any circumstance, then there is no point in screening.

One thing that is interesting is that some of the tests can pick up on different problems that wouldn't be routinely found on the scans. I didn't realise that! Not that we're having another DC, but useful for the OP to know. 🙂

Let us know what you decide @Amber17, if you want to, of course. X

It seems like so many people posting on here are not aware that the new tests (blood drawn from mother’s arm only) are almost 100% accurate and screen for far more than the outdated and/or dangerous nuchal scans and amnios. There isn’t really any reason for anyone to get an amnio anymore!

i know the NHS do not routinely offer them due to the high cost but I personally would’ve done without pretty much anything in my life for a few months to pay for mine! When I had one they were about £300. Only one test is needed and they can be done from 10 weeks with full accuracy. These tests actually pinpoint and decide the Baby’s DNA which is why they are so accurate.

Meant to add that my neighbour was a research scientist on a study involving the Harmony for the NHS. I personally think it’s really sad that they aren’t offered to more women on the NHS.

A friend of mine had a baby with Edward’s syndrome, it wasn’t picked up at the screening, or at the 20 week scan.. After birth she was told her baby would not survive. They waited for 6months for the baby to die. It was utterly traumatic for all involved and she was incredibly furious that it wasn’t picked up. She would’ve had a termination rather than 6 months of a baby who suffered greatly. She wished she had opted for the NIPT.

A very, very rare story, but one perspective to consider. All the best with your pregnancy.

That's awful, but also sounds like it was handled incredibly badly by the hospital who basically told them to wait for their child to die rather than enjoy what time they had and looking at proactive care rather than palliative. I'm sorry they had to go through that.

There is no ‘proactive care’ for this, it’s a terminal diagnosis. They received support from a hospice and were encouraged to enjoy their time. They were obviously given whatever possible to try to make the baby comfortable. This didn’t make it any less traumatic. It was absolutely horrendous for them.

They were further traumatised by the hospice who made them feel they should push for anything which would extend the baby’s life. They did not want this.

It didn’t really sound like the hospital was at fault, they simply gave the facts. The thing they felt was not handled well was they were not given the opportunity for termination.

Only one person I know declined tests, she had decided she would have her child regardless. Her baby was born with Downs Syndrome. She wasn’t surprised, as she said the pregnancy felt so different to her first.

@Roselilly36 with all due respect I highly doubt her pregnancy feeling different was due to her baby having Downs Syndrome. My 2 pregnancies were so different and both babies were born perfectly healthy. I would hate for any pregnant woman to think that because their pregnancy feels different there is something wrong with the baby.

@Bubbles021 my heart broke reading your story. Just wanted to acknowledge it

Back in the 90s I declined screening with my second and third pregnancies. Both babies were fine.

I'd had a scary couple of weeks after accepting screening with DC1 and it caused extreme anxiety, partly due to how it was handled - I was told there was a potential issue via a message on my answerphone and had to wait too long for a scan which confirmed that DC1 was absolutely fine.

After that I decided I wasn't putting myself through it again.