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?

Babies with T21, T18 and T13, which is what the combined test is looking at, can appear normal on scan. With T21, 50% of babies appear normal on scan, less for T13 and T18 though.

I work in this area and we have people who opt for an amnio to confirm/exclude a condition. If confirmed, some opt to continue the pregnancy. As they know their baby has a life limiting condition (T13, T18 or other structural/chromosomal condition), they are able to make carefully considered palliative care plans with consultants. This way they are able to spend those hours/days/weeks with their baby with all plans and support in place instead of scrambling around at the time trying to learn and negotiate a new condition. They are also able to ensure they are birthing in a unit which has the facilities to deal with a baby with additional needs.

Just as an FYI, risk of miscarriage with a CVS are 1-2% which is too high for many people so we have lots that wait until 16 weeks to have an amnio. Studies have shown that the 1:100 miscarriage risk widely quoted to women is actually much higher than the actual risk. My hospital quotes a risk of 1:700 - 1:1000 risk of miscarriage. They are very quick and usually very straightforward procedures.

I didn’t have the screening tests with any of my dc and I never had it questioned or commented on by the midwife or sonographer.

Like some previous posters, I wouldn’t have wanted an amnio and wouldn’t have had an abortion based on the test results so chose not to know.

I don't agree with poster who said it's cruel to have a baby who has a high possibility of dying. Hospitals can give palliative care even to tiny babies. It doesn't mean suffering. 'Tiny Lives' (BBC) gave an example of just this where twins were born prem and it was clear one wasn't going to make it due to bleed on the brain. The family were grateful to have time to say goodbye and the mum said more than once how comforting it was to be able to hold her baby.

Obviously screening is a very personal decision, and each of us makes a choice.

I did have early screening (privately as not much on NHS those days e.g. nuchal fold) and nothing came up. DS has a range of issues which would never have got picked up anyway, and its just part of him. So these things are not black and white. I really don't know what I would have done if screening had been positive either.

Anyway, sounds like you've thought it all through OP. Good luck with your pregnancy and the birth of your baby.

I think it depends what you would do with the information. Whilst I would happily raise a desabled child, I don't think I could cope with watching my child die, or the thought of them suffering needlessly. I would no have continue with a pregnancy if the baby had a condition that was not compatiblewith life, so personall, I needed to know. However if you're 100% sure that knowing about any of the conditions would not change your choices, then there would be no point testing.

The testing isn't even offered in Northern Ireland. It's not a part of the routine pregnancy testing.

I had the 12 and 20 week scans but that was it. I waited for years for my baby, I was never going to risk an amnio and as a pp put it, my heart made the decision rather than my head. As it turns out, DD has a disability that cannot be screened for, so it's not a catch all process anyway.

I declined screening for DC1 as it wouldn’t have changed anything. I did get screening for DC2 as I thought a difficult pregnancy/severely disabled sibling would impact on them. My midwife said this wasn’t uncommon and supported me with both my choices.

I've always declined these tests. DS is autistic, which obviously can't be screened for. My best friend had to terminate at 14w due to anencephaly, and it's affected her very much, even though she knows that her baby couldn't have survived. I also know a lady that MC a healthy baby due to the amnio and my cousin was advised to abort her very healthy DS due to being high risk of something screened for.

This time I personally may have the Nuchal fold measured, but no invasive tests. I'd not terminate unless I absolutely had to.

Like a pp, DS has something that wasn't picked on the screening (I was about 30 weeks when it came out). I hate thinking about what I'd have done it we knew all they'd have thought they knew. Mt in his 18th and a different chromosome, huge diaphragmatic hernia. Even if I'd gone ahead, when he was born blue and unable to be resuscitated, would I have been handed him to say goodbye given the prognosis.

And now he's 7, mainstream school, average a academically, funny, annoying, loves poo jokes and proof that sometimes you can't call it. I had them for DTwins but because we needed to be prepared and I was already worried about prem twins. I wouldn't have had further invasive testing. I wouldn't have aborted. How could I and still look at DH every day.

It's completely up to you. I declined screening. I didn't want cvs or amnio due to the miscarriage risk. I didn't think knowing that my baby would have a 1 in whatever chance of having downs, edwards or pateaus syndrome would be helpful. My dc2 had a friend at preschool who had edwards syndrome. We lost touch after a while but she was still alive and doing well when she and ds were 12. I know that's rare but personally based on my limited experience I wouldn't abort because of edwards syndrome.

It's completely yours (and partners) decision. You just have to be comfortable with the decision YOU make. We will all have different opinions, just like we all do in different aspects of our lives.
Personally I had the screenings, I don't know if I'd have had the amnio or tfmr if the results had pointed in that direction, but I was of the opinion I'd have rather have had an idea, and at each stage made a decision about the next step I'd be prepared to take. I think it's easy for us to sit here and pass comment but until your in the situation it's very difficult to be 100% sure what you would do x

With my first pregnancy I declined the screening tests as I thought I’ll deal with whatever is dealt to us. Son was born healthy with no issues.

6 years later (Sept last year), our 12 week scan showed a fatal abnormality which resulted in Edwards syndrome. Didn’t even have chance to do screening tests at the time as it was evident. Post mortem showed our diagnosis.

Currently 22 weeks pregnant with 2nd baby and we chose every scan/test going based on our history.

Its entirely your choice, it depends on how you would act based on what your results were.

Slightly different scenario, but the standard tests aren't offered in NI at 12 weeks, so lots of women in the UK take the same road just not out of choice.

Personally, I wanted information so had the quadruple (?) test which was offered when I pushed but didn't pay for the harmony (?) blood test. Similar reasoning to you re 20 week scan.

The only thing I’d say isn’t that it can also pick up other issues. Mine showed low Papp-a which meant I had extra scans and poor growth was picked up quickly. To be fair op, you did say you were getting additional scans anyway though.

Women don't get screening for trisomies in Northern Ireland at all. I think if you are sure you wouldn't want to terminate for any of the possible issues then there's no point in extra testing.

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.

I didn't have the tests during my first pregnancy for this reason. During my second pregnancy, the midwife told me that since my first pregnancy a non invasive test had been made available on the NHS. I can't remember the details (was it NIPT?) but for that reason i did have the screening on my second pregnancy and if this bothers you it might be worth investigating.

Coincidentally, when i had the blood test they noticed a problem with my placenta - not something they were looking for or would have tested for another time but just happened to be in the screening results. So i ended up receiving additional treatment and monitoring that i otherwise would not have had. So teh screening did end up having secondary benefits to me, and i now wonder if my first pregnancy was higher risk than we realised at the time and that i just got lucky then.

To offer a slightly different perspective - I had screening with the pregnancy which turned out to be DD, and was given a 1/9 chance of Downs. (We had the NIPT, it came back clear, DD doesn't have Downs.)

But what the screening did show is that my hormones were out of whack (low papp-a, high HCG). This meant the hospital gave us extra growth scans, so when she stopped growing at 22 weeks, we were already being monitored. If I hadn't had the screening, we wouldn't have known that.

(DD is now fine, but my point is the screening doesn't just give you a binary choice of terminate/don't: it might give you other medical information which will help your baby to be well.)

Wishing you the very best

(and while I was typing that, the poster above said exactly the same thing, much more eloquently and concisely!)

I would be of opinion it is up to each woman to make up her mind. It is such a personal issue and it has the opportunity to bring relief or indeed unleash fear. It allows those who feel they may not be able to continue with a pregnancy an opportunity to excise their access to abortion.

On my pregnancies I wanted to know. I had already decided I was going to continue the pregnancy - (no judgement to those who choose otherwise) but that was the right option for me.

I was blessed with two healthy children, a pregnancy between them (twin girls) indicated at the screening that they were unlikely to make it much further than 20 weeks. That knowledge allowed me do a tiny bit of prep emotionally for the loss and practical prep as in arranging care for my older child. The information gave me the time to prepare to say goodbye - to me that was priceless - to another that might be their idea of hell.

My hope is any woman who wishes to have access to the information has it (this is not a given in Ireland - we had access to private medical care) and those who dont stand beside their sisters that do.

Wishing you a happy pregnancy and a delightful little one that loves their sleep 😴

I think only you can decide what's best. I had the screening in my first pregnancy last year, came back extremely low risk (something like 1 in 100,000 chance). At 27 weeks fluid was discovered around my son's brain at a private scan. A week later and I'm having an MRI. Two weeks later myself and my husband are sat in a doctor's room being told our son had been having strokes and seizures causing irreversible brain damage. He'd never walk, talk, move independently. He'd also like pass away within the first few years of life. At 33 weeks we chose to end the pregnancy to save him from pain.
I tell you this because not all issues are picked up at the screening test, and also not all issues are picked up by the 20 week scan. Genetic testing after my son died showed I actually carry a 'faulty gene' that had caused my son's problems. I'm currently 36 weeks pregnant and had a CVS this time, and whilst there is a chance of misscarriage, it is extremely rare, especially when performed by a good doctor.
Only you and your partner know what is right for you, but it can be hard to know what you would do in that situation until you're in it.

Completely agree with this. You want to sound knowledgeable but actually making a very foolish decision. I have had a TFMR after my 20 week scan and trust me it's traumatic. Why would you be so utterly foolish in possibly preventing something like this.

I had no blood screening- my choice. We were prepared to accept whatever happened, and if we had a baby who wasn’t destined to survive then so be it.

Its your choice and your body so for all those saying it’s irresponsible, remember it’s YOUR choice.

I declined the tests. The amount of results that came back high and there was nowt wrong and stressed out MTBs was ridiculous. Just no thankyou.

Irresponsible my arse

I also refused screening for all 3 of mine, except for scans.
I wouldn't have aborted no matter the outcome so I didn't see the point.
The midwife didn't seem surprised.

Im very sympathetic. I’m not medically trained, and I did a lot of research trying to decide what to do about testing. I found it very, very hard to decide what to do. In the end, DH and I decided together, we would rather have the tests whilst knowing that they aren’t diagnostic, because we would go on to have further testing. An abortion would have broken my heart, but personally I am pro-choice and I’d rather have as much information as possible - even knowing the results aren’t certain.

The problem is you cannot know for sure. And you’re literally making a life or death choice. It is difficult, there’s no doubt about it.