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?

I declined downs screening with both of my children, im a learning disabilities nurse and it never even crossed my mind that I'd want to get rid of a child with downs.

I did test first time for Edwards and patau. Second time baby didn't play ball for measurements and we agreed actually we wouldn't act on anything anyway. We discussed if there was an issue I wouldn't abort but would consider organ donation - something good coming from our sadness. Luckily it never came to that.

Like not knowing the gender it seems a strange choice to a lot of people

I didn't decline, recently got mine back.

My concern wasn't Downs Syndrome. It was the other 2 I wanted to be more prepared for being 12 weeks rather than find out at 20 weeks.

Thankfully my results show a lower risk for all three.

You have thought about this deeply, that is apparent I think your reasoning is sound. It doesn't matter that it isn't commonly done.

Best wishes to you and your family

I’m a midwife who works in this area.

You sound well informed and it’s entirely your choice to have screening or not. Also if you want, you can opt to have screening for T13&18 and not T21 (and vice versa)- it’s not ‘all three or nothing’ although you have to have T13 and 18 if you want either of them, the only one you can have singly is T21.

Lots of women decline screening and knowing you wouldn’t do anything with a result is a very common reason. Just because an abnormality is suspected or detected it does not mean that you must terminate an affected pregnancy. There are many cases of women who continue pregnancies to term knowing that their baby has a very poor prognosis and if they have chosen that path it is not for anyone else to say that’s not right for them. Babies even with anencephaly have been known to survive long enough to go for hospice care. It’s a really individual choice and there’s no right or wrong answer because the right thing for one may not be the right thing for another.

It’s definitely not ‘foolish’ not to have screening, even if most people choose to accept it. It’s still a valid choice

I declined at a similar age. I felt that statistics don't give the fully story and even if we had discovered Downs etc., we didn't want to terminate. My midwife was a bit surprised because it's unusual to not want the tests but was supportive.

Increased nuchal translucency can be caused by other chromosome abnormalities apart from Edwards, Patau and Down syndrome snd would be picked up by the NT scan. Also low PAPP-A which is measured by the blood test is starting to show links to babies with IUGR to increased risk of pre-eclampsia and some hospital are offering additional prenatal care to these women.
Also if you are in England and screen high risk from the first trimester screening you will now be offered a NIPT test of the NHS rather than going straight to CVB or amnio which is a blood test with no risk of miscarriage but is still a screening test not diagnostic but more accurate than the serum screening.

Of course it is your choice to have it or not. They may ask you again about screening to check you don't want it than just have been missed.

My DH and I have declined for all 3 of ours. We wouldn't terminate our baby so doesn't make a difference what the results were.

@MolliciousIntent I found your comment incredibly rude. I for 1 think getting to hold your child in your arms and love on them for whatever time you have with them is a very good reason! A child shouldn't be loved any less because it's life will be short. A termination at 13 weeks doesn't get any recognition in terms of death certificate or burial, no outlet for grief for the family, a baby carried to term, does have those rights.

The posters accusing those who don’t have screening of being irresponsible, what you are essentially suggesting is that disabled babies should be terminated, and that is venturing into the realms of eugenics.

Nobody is wrong for terminating a pregnancy, but nobody is wrong for not doing so either.

Personally I didn’t have any kind of screening because I would never have terminated.

While screening does give information on some conditions, the reality is that so many other disabilities, some of which will be life-limiting, cannot be detected before birth. Screening isn’t a magic bullet which guarantees a healthy child, and the percentages of downs, edwards etc that are detected during screening is actually very low. So it’s not a case of playing with fire, the likelihood is that your baby isn’t going to have one of those conditions, irrespective of whether you have screening.

I'm not sure what accounts for this pervasive tendency I'm seeing nowadays for women to refuse scans and even all medical attention.

I suspect it's backlash against the overmedicalisation of pregnancy and birth.

Pervasive is an interesting choice of word there @ChagSameachDoreen

Perhaps it is a backlash to the overmedicalisation of pregnancy and birth

Perhaps because not everybody is comfortable with the idea of abortion.

I'd be interested to know where it is your seeing this so called trend you know @ChagSameachDoreen

I'm so very sorry for the loss of your baby.

I think though it's a very personal decision to different women. Some women know that they will want to carry a pregnancy to term regardless, though all options are traumatising.

I don't think it's fair in the kindest possible way to call their perspective foolish.

As a TFMR parent I find it quite unfair that you would say 'you are essentially suggesting is that disabled babies should be terminated, and that is venturing into the realms of eugenics.'

I understand that you go on to say that it is each individual's choice, but believe me, no parent is terminating a pregnancy for the shallow reason that their baby will be disabled. They end the pregnancy because when you're sat with a doctor hearing how likely it is that your child will be in pain and will suffer immensely, it really doesn't feel like there's a choice.

Throughout my pregnancy I was horrified at the idea that someone could terminate a pregnancy post 24 weeks for a medical condition, until it was me learning that my son was unbelievably poorly. He'd had strokes and seizures from around 25 weeks. By 30 weeks his head was measuring 4 weeks behind due to this. His brain had huge holes, gaps and clefts. We were told he'd never walk, talk, move/eat independently etc. I spoke to specialist researchers from Norway about his condition who informed me that because of the holes and gaps, he'd never have the ability to recognise who me or his dad were. He'd also live at most a few months, where he would continue having strokes and seizures. And he still had ten weeks left of the pregnancy. He was my first child and the most wanted baby boy. And I can tell you with fact that his disability was not the reason we ended the pregnancy, but the suffering he would have faced is the reason.

It's a stance that everyone has an opinion on and will consider what they would do in that moment, but honestly you cannot know until you're in the situation. A year later I am still recieving trauma therapy from the procedure of stopping his heart, delivering him still at 33 weeks and carrying his tiny coffin. But I am also glad he never felt one speck of pain, and only knew the love of being inside me. There's absolutely no right or wrong. It is not wrong to continue the pregnancy and it is not wrong to end it. It's the parent's individual choice.

@Bubbles021 · where did I say that? As I said, the decision to terminate is a very personal one, but there is at least one poster on this thread who has implied that anyone not having screening is irresponsible because a baby with disabilities should be terminated.

Some parents make that very painful choice, and others don’t.

But to suggest that everyone should, as PP has, is where I’m talking about heading into the realms of eugenics.

It’s interesting that some people on here, who would call themselves pro choice, are actually telling others that their choice not to screen is irresponsible… it then becomes a pro-abortion view rather than a pro choice one .
As others have stated, pushing that view onto others does stray into eugenics.

I thought exactly the same until I got in there, then I changed my mind

if your issue is with the follow up tests as opposed to the initial bloods then the obvious choice is Harmony test - again not diagnostic but about as close as you could ever get. Far closer than the current standard NHS testing.

Haven’t read the thread so I imagine this has been said already.

I declined with my first based on similar logic to yours. I did have it with my second as I was a geriatric mum by then. They won't mind if you decline the screening one bit as long as you're engaging with the necessary tests

I declined screening at 12 weeks also.
The midwife looked at me with sympathy and said she would let me think about it again.
I knew that the tests weren't accurate and just gave a ratio and that I wouldn't have any other invasive testing or TFMR also. There's also lots of conditions that aren't tested for and not picked up on scans and every pregnancy is a risk. Very personal choice! You do what feels right for you.

I declined the screening and they did have someone come and explain it to me and ask did I want to reconsider but I declined again and that was it . I'm home now in Ireland and screening isn't offered as standard here, you have to pay privately. I presume a lot of countries are the same.

But if they wouldn't abort anyway, why not have the tests?

Because the tests aren't accurate and 9/10 just cause unnecessary stress. Have seen that stress time and time again. Pregnancies that should have scored high didn't and those who should have scored low, didn't. What's the point of them.

@ChagSameachDoreen refusing scans and medical attention isn't the same as not testing for some conditions in an unborn child.
As I've said previously is a very personal choice! @MolliciousIntent I'm not sure how you can call any termination relatively non traumatic. You have voiced your opinions, it's not a lapse in judgment.(Yes I've worked in the medical field for 15 years) Either way if my child has serious condition I couldn't live with myself knowing I terminated and all the what ifs. It's all a tragedy! Not inviting unnecessary tragedy!
Because I wouldn't terminate doesn't mean I would judge anyone else for it or wouldn't support them.
This is a very emotive subject and a very personal decision.

We've also never done the screening, for similar reasons, I have friends who have both chosen to terminate and chosen to carry their baby to term with an incompatible with life diagnosis. I don't judge either but know which path I'd prefer.

I'm currently older (38) and 24 weeks pregnant. We still declined screening. I've read that only about 40-50% of downs syndrome cases are picked up at the 20 week scan. Never had any issues with medical personnel about this, they are always polite and move on.

I chose to have the screening to Edwards and Pataus but not Downs, on the basis that I wouldn't have had amnio or a termination for a baby with Downs Syndrome. Personally I would have considered termination for Edwards and Pataus as they are extremely life limiting/incompatible with life, whereas these days most people with Downs syndrome live fulfilling lives.