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?

You sound much more medically in-the-know than me, but just wanted to say that I declined the testing too - much more from a 'heart' than a 'head' perspective.

I think it's quite uncommon and, although I wasn't pushed, the midwife and sonographer definitely seemed surprised.

Best of luck! X

If you know you wouldn't abort, then the only other thing is preparedness. Not sure how much Downs would show up on the 20 week scan - possibly heart issues but otherwise I assume its easy to miss? Arguably Edwards and Patau is likely to be not missed if its full not mosaic on the scan. So you'd be prepared for the bits that matter - the medical issues vs the no of chromosomes.

I declined and they didn't seem bothered. They said if I wouldn't have further testing there wasn't much point. No one questioned me or tried to talk me into it. I didn't get dc2 results until after he was born as they had been miss placed so I didn't bother with dc3.

Well, I think you'd be very foolish to decline, it shows a real lapse in judgement to me. Let's go worst case scenario:

Your baby has Edwards Syndrome, and is going to die soon after birth. You have the screening and find out at 13wks, you have the option to have a relatively non-traumatic termination and avoid the utter misery of carrying a baby to term just to have it die in your arms. You don't have the screening, and maybe it's picked up on at the 20wk scan. You then have to have a very traumatic termination. Or it isn't picked up on the scan, and you carry the pregnancy to term and then give birth to a baby who does shortly afterwards.

There are no sensible reasons to refuse the blood screening. There's more of an argument for not having CVS or amnio, but refusing the screening is just stupid, in my opinion, and inviting unnecessary tragedy.

I declined as well. The midwife doing my 12 week scan didn't seem that surprised and said it's not rare to decline. She said (which I agree with completely) that in getting the initial NHS screening, you need to consider what you would then do about amniocentesis or CVS. I knew I personally I wouldn't have either due to the risk of pregnancy loss (and that I would also choose to continue any pregnancy to term). This was just after a MMC in my first pregnancy, which may have affected my perspective.

Other question I suppose is whether you would get the NIPT.... I might in a future pregnancy in terms of 'preparedness' in terms of being pretty accurate in itself, if I didn't opt for a amnio/CVS to follow.

A very personal decision and all the best with whatever you decide.

It's your body and your choice. I had all the tests when I had my DS. All back negative. He is severely autistic and undergoing genetic testing because of a few physical anomalies (single crease on both palms, flat head, big eyes).

I feel sick at the idea that I might have aborted him if I had known about these things prior to giving birth, I almost certainly would have aborted, believing a child like 'that' to be wrong and against the norm. I then had a friend who had a baby that was 'incompatible with life' that died within two days of birth, not picked up on screening.

With my DD I denied screening. I had suffered a late loss between DCs and with DD I had a massive bleed and constant spotting from a huge sub chorionic hematoma, which lasted about eight weeks. I had scans to check the bleed was shrinking, but that was it.

I am so so glad my DS is here. He is brilliant. My DD has no illnesses or syndromes that would've been picked up in a screen. I know I took a risk, but it was a calculated one.

Mumsnet isn't a friendly place to people who don't screen, so strap yourself in.

I knew I wouldn't want further tests so declined this screening too. It's up to you whether you justify your choice. As they say on Mumsnet, no is a complete sentence! Just be prepared for a bit of attempted coercion from some midwives/consultants.

I think this is pretty badly worded.....

There are many reasons to decline- anxiety with a high probability result for one, knowing you won't have a definitive answer as you personally wouldn't opt for an amnio or CVS. People weight up the risks and benefits of tests in a way that is personal to them- rather than the black and white way you describe others as thinking as you might or they are 'stupid'.

I also work in a medical field btw, just like the OP. I'm happy I made a well considered decision for myself.

I think difficulty conceiving/pregnancy loss does come into it too. I was trying to think how I'd explain why I declined and it's hard to do. Luckily the midwives have been kinder to us all! 💞

What an awful post. It's not a 'lapse in judgement' to decide you won't terminate your baby.

Many people would rather meet their baby, if only briefly, than choose to medically abort it.

Abortion is the right choice for some, for others it isn't an option at all. I think you should respect that.

I declined them all too, except the scan. I explained I wouldn't abort, I work with lots of people with a range of disabilities. It's your choice. For me personally I believe that I would rather have given a baby a chance of life than abort. A friend was advised to abort due to abnormalities but her baby was born 100 percent healthy so mistakes can be made either way. You shouldn't feel pressured to take the tests if you don't want to. There is a lifetime to learn about a disabled child too so knowing a few weeks earlier wouldn't have mattered to me. Heart defects etc would show up on the 20 week scan anyway so the medical team would be able to prepare then. Everyone is different in this situation.

I declined it, on the basis that I wouldn't abort for downs. I could have had it for preparation but I decided to leave it and deal with what I got. I got a healthy baby.

I'm sorry, I think it's very cruel to continue a pregnancy that means a child is born only to die. I can see it's an unpopular opinion but to my mind our duty as parents is to protect our children from as much suffering as we possibly can. Continuing a pregnancy that is incompatible with life is, in my opinion, the opposite of that.

If your baby has Edwards, it may NOT die soon after birth. Some parents choose to continue the pregnancy to give baby a chance to survive.

I'm not sure any TFMR is truly none traumatic.

Babies diagnosed as full trisomy in utero can also be found to be mosiac when bloods are repeated.

I've never had the bloods screening test (9 children) as it only gives a stat and you'd need further testing anyway. I did allow measuring of the nuchal fold as that gives a good indication of whether something serious is wrong with the baby.

I also have a friend who had an undx Edwards baby and she told me she was glad she hadn't known and had had the chance to meet and have her baby for 9 weeks. That confirmed my decision for me.

I had a dc at 43.2.i refused screening. After the 12 week scan she did tell me that all looked well..
I knew regardless I couldn't have terminated.

I see the occasional really tragic case on here of people who find out the baby had edwards or Pataus at the 20 week scan and end up having a late term abortion or neonatal death. Screening gives you the option to find out earlier and terminate in a less traumatic way if that is your wish. For this reason I got the NIPT at 10 weeks. NIPT is actually very accurate if you are worried about the probabilistic nature of the standard combined (scan and bloods) pathway

I do think sometimes when people reject the screening are mainly thinking about downs but the test screens for other conditions incompatible with life

I also think (and don't want to assume you are the same but just sharing how I was) that with my first child I had little idea how differently I would have felt about termination after the 20 weeks scan, which is basically an induced birth, compared to in the first trimester - it is a very different prospect indeed.

I don't think you are 'foolish to decline' either. It's a screening test and not a terribly accurate one. If you aren't going to have any invasive testing to follow up a high risk result there really is no point. Physical characteristics of trisomies can be detected at the 20 week scan. I personally think you have made a well considered and informed choice.

@Amber17 I am 12 weeks pregnant with twins and we declined for precisely the same reasons as you. I also declined when I was pregnant with my first. Personally I don’t think there is anything you’ve missed in your thinking/reasoning about it.

This second time I declined they did seem surprised and the whole process of having the scan certainly assumed that I would have the screening (I had to actively say ‘no I don’t want this bit’, rather than them asking if I wanted it first). I don’t know if this was different because it was at the twin clinic (maybe more people having twins have the screening because twins are seen as a ‘high risk pregnancy’? - I’m just speculating here).

And incompatible with life is a loaded statement. When babies are treated for the medical issues they present with it is possible for kids with Edwards and Patau to survive, be loved and be happy.

If you refuse to resuscitate, if you refuse to operate, if you push parents for abortion and comfort care, of course they won't survive.

I also declined screening prior to the implementation of NIPT. IT was a considered decision based on the fact, that should the result be high risk for trisomy I would not make a decision to have TMFR on that basis alone. This was a decision I discussed in depth with a parent who had extensive obstetric experience and was exceptionally pro-choice. None of the HCPs taking care of me batted an eyelid. I carefully explained my reasoning (not that they asked) and I continued to receive excellent ante-natal care

It's a few years ago but I declined testing for number 2.

I had what eventually turned out to be a false "high risk" reading for Number 1 and was left to stew for a few days over a bank holiday weekend. Even after getting the all clear I wasn't able to enjoy any of the remaining pregnancy through worry about whether he was really OK.

I knew I wouldn't have aborted so I didn't see the point of testing.

Technically every child is born to die....

I declined mine. I was not prepared to terminate under any circumstances. Part of me did wonder if I was naive to do so, especially with my second child. But I knew that even if they were disabled, I would never have been able to terminate the pregnancy.

I'm a midwife and see many women who choose to decline screening for trisomies at their dating scan. I would say from my experience about 1-2 in twenty women decline it (this is just my experience, not sure of the official NHS stats) so it's not that unusual at all. Many women choose not to have it because they wouldn't opt for invasive tests such as CVS or amnio even if the CUBS test came back high risk.

I've also sadly been involved with two cases where women have chosen to have an amnio following high risk CUBS and NIPT screening and then subsequently miscarried their babies around 16 weeks. In both cases the postmortems showed the baby did not have the conditions they screened positive for. It's rare, but it does happen.

I declined the screening with my first pregnancy, but chose to have it with my second.

Completely your choice and I hope you feel supported by your midwife whatever screening you choose or decline.