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Pregnancy

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Original poster

Declining antenatal screening tests

82 replies

MyBreadIsEggy · 12/03/2016 16:23

Has anyone else declined antenatal screenings and been treated like a [word removed by MNHQ for being disablist] because of it?!
I declined any screening with DD, and have done so with the pregnancy too. The midwife I spoke to just kept saying "are you sure?", "do you really understand what you're saying no to?", "have you even read the booklet?" etc.
Yes I've read the booklet. Yes I know what I'm saying no to!
We have done our research, and according to everything on the NHS website, we pose a low risk of our baby having a chromosomal disorder (I think it's 1 in 1500 for Down's Syndrome and even less for Edward's Syndrome or Patau Syndrome).
We don't feel the need to know if there were to be anything wrong with our baby. And surely that is a desicion that should be respected by our MW?
I am quite young, and the MW's I saw (except the one that delivered DD) were very patronising throughout the whole process, and from speaking to other young mums that go to the same groups as me, their experiences were quite similar.
I don't want to come across as an arsehole to the MW, but I want her to stop trying to talk me into something I don't want to do!

OP posts:

duckyneedsaclean · 12/03/2016 16:26

I presume you're not having screening because you wouldn't have an abortion? If so just say that, no problem.

mangocoveredlamb · 12/03/2016 16:26

I suppose people don't really decline, so it's a surprise?

Personally I wouldn't decline, as I'd want to get support and plans in place and find out as much as I could about a potential problem.

BUT you are quite within your rights to decline. Just stay polite and say no thank you, I've read the literature and I'm sure.

Owllady · 12/03/2016 16:27

Yes, I'd be very plain. I don't think it's anything to do with your age (I was young too) I just think some people are patronising :o

DropYourSword · 12/03/2016 16:28

Some midwives are patronising or rude. Some though are just trying to do their job...everyone is allowed informed consent (or refusal) but it's her job to ensure you understand what you are accepting or declining, or at a later stage she's at risk of you claiming you had no idea about something important and potentially sueing her. I think midwifery is becoming more and more litigious so there's often a lot of arse covering required! Try not to take it personally.

Mermaid36 · 12/03/2016 16:30

I think it's because they are scared of the legal ramifications. If something was to be an issue and you decided to sue them and say you'd never been offered the tests, or didn't know what you'd said no to etc.

In contrast, we were offered (and took) a test that wasn't suitable for our type of pregnancy, but we hadn't been told it wasn't suitable. We had a horrible couple of weeks where some really scary results came through.
We haven't gone as far as legal issues (and would never do that), but have formally complained to PALS at the hospital about being offered this (when other Trusts don't offer it at all because of the risk).

KittyandTeal · 12/03/2016 16:33

If you are declining them because it wouldn't change your decision re a termination etc then I understand and respect that.

However, if your reason is that you are a low risk pregnancy then I will say my baseline was 1:8000 for Edwards. Dd2 had Edwards. Low risk doesn't mean your baby won't have an issue. I'm sure you understand that.

The other thing to consider (and I'm sure you have) is that you may have already decided that even if your baby does have a chromosome disorder you won't terminate and that's fine. However, knowing your baby does have a disorder can help provide a care plan to reduce the chance of stillbirth or being able to deal with any issues at birth for example a baby with T13 or T18 will more than likely have feeding issues. If you have a diagnosis the doctors can have a plan in place for tube feeding if the baby is born alive rather than realising at birth that there is an issue and trying to diagnose an issue at birth.

That is all making the assumption that you would actively work towards a live birth. Some people take the attitude of 'what will be will be' and if that's the way you want your pregnancy to be then definitely there is no point in having any antenatal tests.

Are you also turning down scans? Trisomy issues are often picked up as soft markers on later scans so if you don't want to know then that might also be something you want to talk you your midwife and sonographer about.

I hope I have got the tone right in this. I don't want to sound patronising.

Chrysanthemum5 · 12/03/2016 16:36

I had tests where they could examine me and look for things eg I had the ultrasound tests where they look at heart function, spine formation etc. I declined the blood tests where they gave an estimate of the likelihood of the baby having Down's syndrome etc. I knew I wouldn't have an amino or an abortion (I believe in a women's right to choose) so there was nothing to be gained by knowing the risk. Also the tests at the time were not really accurate so I just didn't want them.

The midwives were all fine with that. Never had anyone even mention it once I'd declined. It was quite a while ago maybe they are told now to make sure you're aware of all the consequences of the decision?

christinarossetti · 12/03/2016 16:41

As pp said, some midwives are rude and patronising to everyone. May not have been personal!

Also, fear of litigation is a huge driver in maternity. It's the NHS's biggest payout of compensation, and they really, really, really don't want anyone to think that they haven't been made aware of all the risks of something they decline or agree to.

It's not just possible problems with the baby that can be picked up on screening tests, though I'm sure that you're aware of that.

loosechange · 12/03/2016 16:41

I had the 20 week scan and that was it. I declined all other screening on the basis, as above, that I wasn't going to have an abortion so it wouldn't affect the outcome.

It isn't that unusual an opinion if you aren't going to have an abortion . I asked if there was anything that could be done antenatally if a problem was found, and the midwife seemed surprised at the question, but said no, and understood my perspective.

Whatthefreakinwhatnow · 12/03/2016 16:45

It's absolutely your choice, and I declined with DD1 on the basis that it wouldn't have concerned me if my baby had been born with DS.

I now realise how naive I was and was very fortunate thst everything was ok with DD. A friend did the same, turned down tests and her 20 week scan -her baby was born prematurely with a serious heart defect as a result of undiagnosed DS - he lived a very short life in the NICU before passing away.
Of course knowing wouldn't have guaranteed that he would have lived, but a planned section would have placed less stress on his poorly heart and he could have received surgery that could have given him a chance at life.

I did therefore have the tests for DD2, and will do for any other babies that we have.

Please think carefully about this before deciding -it's not just about the risk, it's about having a care plan in place should your baby need it too.

Dizzywhore · 12/03/2016 16:54

I didn't have the tests either. No one seemed to mind! My DH did a bit but said it was my choice.

Original poster

MyBreadIsEggy · 12/03/2016 17:05

Glad it's not just me....and I never thought about MW's trying to cover their arse against legal action if something was wrong!

OP posts:

KittyandTeal · 12/03/2016 17:29

My consultant got very twitchy when I suggested that given my blood work I should have been picked up as high risk but wasn't. This was backed up by kings too. (I was absolutely not even thinking about sueing or compensation, I iust wanted answers)

I think the culture of blame and compensation grabbing is so common now that the NHS sadly need to cover their asses at every turn. I guess they'd rather someone be annoyed with a patronising midwife than someone turn around and say they didn't have the test options explained properly.

primarynoodle · 12/03/2016 17:40

Absolutely your choice... although as somebody who has been through the worst i have to say this:

I was 21 when i concieved dd1 and at the 12 week scan a problem was detected - whatever happened our daughter would have died either in utero or shortly after birth... if i hadnt known and had had a very late miscarriage/stillbirth/prized newborn only to be told she had minutes to live it would have been soooo much worse than the heartbreaking decision to end the pregnancy informed at 13 weeks..

It isnt just a downs test is what im trying to say i guess

Original poster

MyBreadIsEggy · 12/03/2016 18:22

So sorry to hear your story primary
We have discussed this in depth and decided together that we wanted to decline screening again this time round
(I come from a religious family, and abortion is definitely not on the cards for us).
Sounds like I need to inform the midwife of that reason if and when the discussion arises again x

OP posts:

Jesabel · 12/03/2016 18:24

Are you declining all scans and tests or just a specific screening?

KittyandTeal · 12/03/2016 18:31

I think there are many religious people out there that would prefer to leave things in the hands of God (if that's the right way of phrasing it?)

I'm not one of those people, obviously, but I know a few couples who are. As long as you have considered the implications of something not being right and not having a care plan in place for birth or avoiding stillbirth then there is absolutely no reason to have the testing.

I think what some people are trying to say is that often the screening is not just about the 'would I have a termination?' question. It's also about having knowledge to avoid stillbirth or having a plan in place tailored for a specific diagnosis.

However, if you are of the 'leave it in gods hands' thinking then explain that clearly to the midwife and tell her you no longer want to discuss screening.

You do need to consider how much of the screening you are refusing. Is it the blood work but you want a 12 week dating scan (which can pick up lethal conditions) or are you wanting to avoid all diagnostic scans in which case you won't want a 20 week scan.

If you want basic imaging to give you an accurate due date then you may want to consider asking if they can do a 12 week scan with just a crown to rump measurement to date you. I don't know where they would be legally if they picked up a major issue, I imagine they would have to inform you of it. Another thing to check.

IamCarcass · 12/03/2016 18:38

I declined the nuchal screening, due to my worry about being pressured to terminate. My midwives were fine with it both times, I found sonographer more respectful the second time around.

Jesabel · 12/03/2016 18:39

Wouldn't you want to know if your baby has a condition that needs to be treated pre- or at birth? The midwife probably wants to be clear that you understand that you might be taking risks with your baby's life.

scoobyloobyloo · 12/03/2016 19:13

I naively declined screening for my first baby and luckily she was fine.

I am now 23 wks with twins and again declined screening saying (naively I now believe) that we would never have a termination.

A scan showed baby b has bilateral renal agenisis - knowing this has allowed us to make a measured decision as how best to cope with knowing that we havea baby who will suffocate at birth along with a healthy baby.

It wasn't the bloods that showed this, it was a scan, however the purpose is the same. There is always the possibility that a baby may not be compatible with life. Unless you know for sure that you could deal with this without time to prepare for it or that you would never have a termination regardless then I would always recommend having the tests.

I never, ever thought something like this could happen to us but the scans and tests I have had have allowed us as a family to come to terms with the fact that our baby will die. I can't begin to imagine the trauma of finding this out just after giving birth.

KittyandTeal · 12/03/2016 19:21

Scooby 💐 For you and your beautiful twins.

I'm glad you've had a bit of time to get your head around it. How horrific for you. Xx

Champagneformyrealfriends · 12/03/2016 19:26

Scooby
I can't tell you how my heart goes out to you. Xx

FeckOfffCup · 12/03/2016 19:40

What type of screening are you talking about?
I don't remember being offered any screening other than a nuchal scan. And we were offered that OR a dating scan at 12 weeks, you couldn't have both. The midwife said most people choose the dating scan and then had the anomaly scan at 20 weeks so that's what we did, it didn't feel as if we were declining anything though and she didn't pass comment on our choice.

bananafish81 · 12/03/2016 19:43

Feck weren't you offered the combined test as well as the nuchal?

FeckOfffCup · 12/03/2016 19:46

banana, no not that I recall, I'm not even sure what you mean by a combined test?

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