I have just been called ableist because I support antenatal screening

[noideawheretostart]

And I'm so blind sided by it that I don't really know where to begin with how incorrect that statement is.

Women should have the choice of knowing about these conditions and making a choice about an earlier TFMR if that’s what they want - it’s barbaric to expect a woman to carry a baby who cannot live to term, deliver the baby and watch them die unless this is what they choose to do.

I agree absolutely that women should be encouraged to make an informed choice, both about having the tests and then what to do once they have the results.

They need to be given facts and have the choices set out in an unbiased way and then once they have made their decision it should be respected - whatever they choose to do.

It didn't happen like that for me and I was shocked at how hard the drs and midwives tried to force me down the road of further testing and termination if the results for DS were positive. Not once did they ask for my opinion, or how I felt about it or what my decision was likely to be - they just told me what was going to happen as though there was no choice and that horrified me. I was lucky that I was a nurse at the time and happened to be working with a registrar who had not long completed an obs and gynae rotation and knew about the fetal medicine centre at King's College. They were just trialling the nuchal fold screening and I referred myself there as a private patient. Unfortunately I was too late in the pregnancy to have the nuchal fold screening but had a detailed anomaly scan. I was so lucky to be cared for by Kyoto's Niccolaides who was the first Dr that I met who told me that I had a choice and that whatever I chose to do would be respected by him. He took the time to explain all of the options and the implications of them and through that consultation I was able to decide what I wanted to do.

In my 2nd pregnancy I refused the blood tests and had the detailed anomaly scan at King's again.

One thing I can't understand is the fact that people support a woman's right to choose, but if the reason she chooses is due to disability, she is judged.
How do people rationalise this thinking, that it's okay to terminate a healthy fetus, but it is selfish to terminate one with a disability?

Recently a pregnant friend was told it was offensive for her to say "I don't mind, as long as they're healthy".
Has society really made it offensive for parents to wish for a healthy baby now?
I say this as the mother of a child with a neurological condition.
Nobody ever becomes pregnant and says "I hope my baby is disabled". Some people don't feel they are equipped to raise a child with complex needs. Others just want to be prepared.
Antenatal screening should be available on demand, and it is. I see no issue.

Like I said, some people are very keen on lionizing selective noble benevolence. They're the kind who say to a mum struggling with her disabled child "I couldn't do what you do! You're great!" in awed tones, and feel they've done their good deed for the day. I've met a fecking bucketload of them.

TequilaPilates I had the diagnostic testing done in Germany where doctors are legally banned from recommending a TMFR. They can give you all the facts, they can give you odds on baby's survival based on the anomalies detected, they can tell you about surgeries and palliative care, they can tell you what managing the detected anomaly is like longterm if the child lives that long. They can tell you how and when a TMFR would be carried out, what to expect and what happens afterwards, but they cannot tell you what to do. Or assume any decision on your part.

That is difficult if you need guidance, but it doesn't put any pressure on the woman at an already stressful and anxious time.

In subsequent pregnancies where I was back in the UK even when I just turned down genetic testing (ie amnio/CVS), it was a struggle to make myself heard. And as I had pregnancy complications first and second time round, you'd think the doctors on the subsequent pregnancy would have taken note that it wasn't my first rodeo, but no. They do know best. Apparently. Even when you get test results back proving them wrong. (Other test results regarding a maternal complication, not the baby).

Anyway, yes - any pressure being put upon the woman is unacceptable, any expectations, assumptions and presuppositions about how a pregnant woman will choose to manage her pregnancy after being confronted with a serious fetal abnormality in her unborn are wrong if they influence how HCPs discuss managing a woman's pregnancy to the point where they're not actually hearing the woman herself.

HeadLikeAFuckinOrange

I don't have any issue with parents making a decision for themselves, though others might disagree with me.

I do have an issue with drs deciding that some lives are more valued/valuable than others. That for me is where the issue of ableism comes in and that was precisely what one Dr said to me "why would you want a child with a disability?".

So for me it isn't about individuals making decisions for themselves, it's about attitudes in society as a whole saying that disability is something that should be removed and screened out. In my mind, either choice when made by the parents is valid and should be supported.

CharlieParley

I could not agree more with you. It sounds like Germany have got a much better approach than certainly we had here when I went through it (it was 20+ years ago so maybe it's changed now).

I don't think I would manage well, and I am in awe of the DMs and what they do for their babies and children with significant disabling conditions.

I am clearly missing the point of the anger at others acknowledging the dedication of dms in those circumstances, just as I would be about any dms in adverse circumstances.

I could not agree more with you. It sounds like Germany have got a much better approach than certainly we had here when I went through it (it was 20+ years ago so maybe it's changed now).

It makes me wonder, whether somewhere high up the chain in the UK, there have been number crunchers who have offset the cost to the NHS, benefits & resources necessary to give quality of life for those with profound disabilities, against their financial "input", and so TFMR is often pushed to pregnant women as "the only sensible option".

If this is the case then that would be horrendous, but TFMR is often presented that way.

If this is the case then that would be horrendous, but TFMR is often presented that way.

Honestly, I think you are correct and that is horrific if it is true.

If this is the case then that would be horrendous, but TFMR is often presented that way.

I personally think it's more likely that the professionals who are dealing with terminations are in the business of ensuring healthy pregnancies.

I agree that they do sometimes pitch it wrong and can be one-sided when setting out the options, but I think this is more because a lot of their research focusses on eliminating disabilities using screening as opposed to having been mandated to cut costs by deliberately trying to dissuade parents.

Their careers are based on maximising healthy pregnancies and I should imagine that most of the work in their field is based on the assumption that a healthy pregnancy is the aim - they're not working with thriving disabled people as that's not their specialism.

I support the right of any woman to screen or not screen, and to terminate or not terminate. I trust women to make good decisions for themselves and their families.

Germany is not great when it comes to TFMR btw - even when there is a clear reason to do so, it can be very hard to find a practitioner willing to do so. Termination is not legal in Germany, just decriminalised under certain narrow circumstances, and the barriers to obtaining information are high.

LonginesPrime

Sorry, but that just is not their decision to make.

They may well be in the business of ensuring healthy pregnancies but if they are in any way involved in pre natal screening or in counselling pregnant women then they need to be completely unbiased and their business should be that of ensuring that the woman makes the best choice for her. It shouldn't be about what the Dr thinks is the right choice.

We have the right to autonomy and to informed consent. It is as wrong for a Dr to railroad a woman into having a termination even a TFMR as it is for a Dr to persuade a woman not to have a termination if that is what she wants.

It is not the drs place to decide that they know best and then to persuade the patient to go along with it.

Tequila, I absolutely agree with you that they shouldn't be biased.

My point was more that I don't think they're acting that way because the treasury has instigated a conspiracy to abort disabled pregnancies and more likely that it's a result of their own biases.

I see it in other areas of medicine where the doctors push a certain course of treatment because of their own biases - sometimes it's really hard to get the other options out of them and I often feel that some of them feel that patient/parental consent is a PITA!

I'm not saying it's right, I'm just saying that's probably the reason their minds go straight to termination.

LonginesPrime

Sorry, I misunderstood what you were saying then.

You might well be right there. In which case safeguards clearly need to be put in place to prevent these biases from affecting patients.

kalinkafoxtrot45

While far from ideal, the German law is not quite as you describe.

As of the amended law from 1995, any woman can have an abortion without being criminalised for it within the first 12 weeks if she can show that she has attended a counselling session at least three days prior to having the abortion which must be performed by a doctor.

And contrary to your claim, terminations for medical reasons are legal as per the same law (and therefore also decriminalised) throughout the whole duration of a pregnancy.

As for not finding someone willing to perform an abortion - that may be true for West Germany, but in East Germany where abortion was legal for many years before reunification, attitudes have remained very much the same - it's a woman's choice and where a termination is sought for medical reasons, there is a lot of compassion in supporting the woman. I've certainly never heard of any woman struggling to find someone to terminate there, especially not when it is for medical reasons.

There is a lot of resistance to the law imposed on East German women even now and abortion continues to be viewed differently, both by HCPs and the general population. As of 2014, overall abortions for instance were still 50% higher in East Germany than in the West.

You may not have heard of women struggling to find a doctor willing to carry out a termination, but here in very Catholic Bavaria, if you’re outside the large cities, I can assure you that’s the case, even for solid medical reasons. Attitudes are very different here and a lot of improvements are needed - paragraphs 218 and 219 are far too restrictive. There was an excellent article on medical termination in the Emma magazine some years back but I can’t find it to link for you - if I can find it I’ll post it.

Smother you're minimising and trivialising the soul-searching and trauma involved in making a decision about a pregnancy when screening bloods show a heightened risk of abnormality.

At this point, HCPs direct women towards diagnostic testing. If women take this option up, they make a decision in light of this testing. If not, they tend to continue the pregnancy.

It's really offensive to suggest that women have a screening test then decline diagnostic testing but decide to have a termination anyway without establishing as much as they can about the health status and prognosis of their pregnancy.

Im sorry horse ??? I beg your fucking pardon?

Get lost. I went through it, where the hell you get that from is beyond me.

Just get lost

Where 'I get it from' is you saying, "I can completely understand women who don't take up the first blood tests. Women have aborted perfectly healthy babies on the basis of their speculative nature."

and

'Thats awful, and the reason I didn't have early bloods, etc. Many would have, and have, terminated healthy babies, which is shocking.'

But having nothing more than something that someone said to even suggest that women choose to terminate without diagnostic testing.

So I will get lost as soon as you stop saying that many women terminate healthy pregnancies on the basis of a risk identified through a screening test, without further diagnostic testing, unless you have some data or evidence to give some weight those incorrect and frankly offensive statements.

As I said, kalinkafoxtrot45, I have no problem believing that West Germany is different in this regard. My experiences and knowledge are limited to the East.

So I will get lost as soon as you stop saying that many women terminate healthy pregnancies on the basis of a risk identified through a screening test, without further diagnostic testing, unless you have some data or evidence to give some weight those incorrect and frankly offensive statements.

I have had screening blood tests 4 times and each time I have been given an estimated risk of chromosomal issues based on their profile. There has been a discussion about actual, diagnostic testing after the nuchal thickness USS and the blood test results.

It has been very clear that the screening tests are not diagnostic tests and I find it very hard to believe that women are consistently conflating the two.

My 4th pregnancy my screening tests were not reassuring, the USS was but I still opted for further testing (which was normal). I was given stats and information at each point and made an informed decision. It’s very hard to believe that so many women are misunderstanding what the initial screening bloods mean.

So I will get lost as soon as you stop saying that many women terminate healthy pregnancies on the basis of a risk identified through a screening test, without further diagnostic testing, unless you have some data or evidence to give some weight those incorrect and frankly offensive statements.

Diagnostic testing will cause miscarriage in 1/200 cases, that's what I was told. Someone in my playgroup got an ameniocentresis (sp?) and her pregnancy terminated, for example. It must happen all the time with those odds. So, her pregnancy ended as a direct result of her actions based on blood tests and doctors advice. I don't know if her child would have been disabled if carried to term. Can't ask. But I was strongly advised to take the same test, and my baby turned out to be neuro typical.

We wouldn't accept those odds normally. For example, no adult would take a test that had a 1/200 chance of killing them.

So yes, some women take action that ends their healthy pregnancies as a result of blood tests. Why is it offensive to say so?

I agree with you. It isn't ableism. Well. Not really.

But, I will say that since adopting, people (other adopters and general folk) have said some things that have made me recoil in terms of having a child with SN and their desperation to avoid that at all costs. I don't want to go into details but especially around the chances of an adopted child developing SN that weren't immediately thought to be a risk or wont be obvious from birth/infanthood.

I think some of that strays into ableism.

Quitedrab taking action ie diagnostic testing as a result of blood screening results and the pregnancy then miscarrying is not the same as choosing to terminate a pregnancy on the basis of an identified statistical risk.

Surely that's obvious.

In the same way that women do not decide to terminate a pregnancy based on 'soft markers' identified by scans, but have further diagnostic testing.

CVS and amnios do carry a risk of miscarriage, but see CharleyParley's long post of 17 Oct at 2:58 which explains why the risk isn't a flat one - it varies considerably between consultants. It is very different to have a test done by a consultant whose procedures have never ended in miscarriage over a course of 12 years than by a less experienced consultant.

Also, unfortunately, there is a risk of losing a pregnancy to late miscarriage or stillbirth at ANY point. It's not possible to determine whether a late loss is the result of a procedure or 'just one of those things'. A diagnosis of an abnormality will suggest that the loss was caused by the procedure, but equally it may not have been.

So diagnostic procedures carry a risk of losing a pregnancy but the pregnancy may be lost without any procedures anyway, to be brutally frank (and as someone who has had multiple losses).

I do know someone whose pregnancy miscarried a week or so after an amniocentesis. Of course she was traumatised and will never know whether the procedure caused this. But equally she will never know whether she would have lost the baby anyway.

Choosing whether to have tests, what to have, what decisions to make are torturous, life changing decisions.

Suggesting that women choose to end a wanted pregnancy because of some statistical risk is offensive as well as being simply not true.