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.

Do you know about the bloods horse?

My brother has quite severe learning difficulties and reasonably debilitating physical handicaps. He's in his early 40's now, and my mother is nearly twenty years dead, and she spent every moment of her life once he was born premature, fighting for him to receive the care he needed and was lucky to get an occasional space for him at a respite centre. She died hoping she had secured accommodation for him, but it was inadequate and in the subsequent years the responsibility for maintaining that pressure to keep him adequately cared for was reluctantly taken over by our dad, who is now in his 70's and in failing health, and obviously thereafter, on me.

My dad has often expressed a belief that nature meant for my brother to die which is why he was born so early, and that it was wrong to keep him alive, but my dad fucked off and left my mum to deal, so I didn't set much store in his opinion.

My mum loved my brother fiercely, and she believed that how we treat the weakest in our lives is a mark of how decent we are as humans. But she wore herself down to a wisp caring for him, and she was violently abusive to me, so, you know, she didn't hold that line in everything.

I used to be unquestioningly prolife, because I had seen noble self sacrifice from my mum and she claimed she would never have had an abortion, and my brother is a trusting, naive soul who brings out the protective instinct in me.

But the simple fact is that his existence ate my mother alive, and the mental ill health she suffered turned her into the most abusive monster as she lashed out at me. And he has a half life, and as much as the people around themselves can console themselves with a sense of noble benevolence towards someone less fortunate, he contributes nothing at all, absorbs nothing, understands nothing, and needs to be constantly watched because he has the base instincts of a man and the understanding of a toddler.

Now, I'm not suggesting terminating the disabled on demand. But I am saying to those who would judge a woman who assessed the road ahead and decided to take another turn, don't you fucking dare judge a woman for not being a martyr for your need for noble benevolence. I don't think it comes from a place of genuine compassion at all, sadly. I suspect most people who make these claims are either ignorant or drunk on the fumes of their own self righteousness.

Screening bloods are just that, screening.

Diagnostic testing (CVS or amnio) are offered if you are considered high risk. These are diagnostic tests. There is no epidemic of false positive blood tests leading to tfmr of healthy babies.

Thanks @bemoremagdalen, and others, for your powerful words.

PP experotwould disagree with you as she didn't terminate her pregnancy of her, as it turned out, healthy baby, contradictory to the test results.

Which PP?

RTFT

Yes, I did RTFT.

If you RTFT you'd have seen me posting about my experiences, and perhaps you'd be more sensitive.

I have been unable to find a poster saying they had an incorrect diagnosis prenatally.

I was referring to June 's post regarding her sister told she might have condition incompatible with life, sadly. Baby was fine, it was her who said many would abort for that.

I have rtft, and there are a lot of sad experiences. I'm afraid I cannot remember all the specific of every single poster, but I am referencing the bloods which can place risks as very high when baby is healthy/no DS etc

@SylvanianFrenemies

I had this, not a diagnosis but high risk all through, and the doctors all said to prepare myself for disability, but he was fine. I didn't do the extra blood tests because of the risk of miscarriage.

The scary thing for me was how suddenly I was supposed to consider abortion when it had never been raised at all with my other pregnancies. It was as if my son was in a new category, that didn't come with all the normal protections.

Of course, I think that sometimes aborting a foetus is the right decision. I would never do it after my experience now though! However, as PPs have said, there's something really disturbing about the whole set up and the way it's discussed. But I don't know how else it could be. Abortion is an option, I suppose, and it's reasonable for doctors to say so (?)

BeMoreMagdalen thank you for sharing that. I carry some resentment towards my disabled brother (for reasons much milder than yours). Although he is less afflicted than yours, it was still unbearably difficult for my parents at times. And he is still not fully independent and the hard truth is that he may never be. So I would never judge any woman for choosing a different path. Never. I've seen what this one looks like.

As for the blood tests:

These are the three screening blood tests commonly offered in pregnancy

• the triple blood test for Downs, Edwards and Patau Syndromes ie trisomies 21, 18 and 13)
• the quadruple blood test which only screens for Downs in mid pregnancy and
• the combined screening test which is a triple blood test plus a nuchal translucency scan

(In babies with congenital abnormalities there is too much fluid between the skin at the back of the neck and the spine. This test measures the thickness of this space and assesses the result according to a mass of empirical data collected from actual pregnancies more than two decades ago, including my first one.)

Every pregnant woman undergoing these tests is advised that these are only screening tests not diagnostic ones.

What this means is that the result isn't positive or negative for these conditions, but the result shows either a lower risk of the fetus being affected or a higher risk. The calculations take into account several risk factors, including the pregnant woman's age and health.

Receiving a result that returns a higher risk (anything between 1 in 2 and 1 in 150), so say 1 in 50, does not mean the woman has to be the 1. She is far more likely to be one of the 49, whose baby will turn out to be fine.

The purpose of these tests is to allow the woman to make an informed choice about whether or not she should risk having one of the two diagnostic tests (amniocentesis or chorionic villus sampling (CVS)).

Both amnio and CVS are invasive and come with a real risk of miscarriage. A woman's returned risk of abnormalities may be lower than the risk of a miscarriage after invasive testing. If she would not choose to terminate if abnormalities are confirmed, this also allows her to make an informed decision as to whether she would be better advised to wait for a later level 2 ultrasound scan which can help pinpoint problems so HCPs and the mother and her partner can prepare for the baby's needs.

So, as you can see, the screening tests are designed to help avoid unnecessary invasive testing. They are not designed to tell pregnant women that they are carrying a child with abnormalities, but only to assess the risk of whether she may be.

Yes, she was told her baby might have a condition. She didn't say "and so she was offered an abortion with no further follow up".

For conditions that can be diagnosed in the lab, blood testing provides a risk categorisation. If someone is high risk and considering tfmr they are offered CVS or amnio, which provides certainty.

It's all very well saying "someone might have an abortion on the basis of incorrect bloods", but the system doesn't work like that.

Even when I'd had scans showing my baby was very unwell and physically abnormal, and a positive NIPT (more than 99% accuracy and not associated with false positives), I was still encouraged to have amino or cvs as I was considering tfmr (which I ended up having).

@quitedrab - do you mean invasive testing? There's no blood tests that carry a miscarriage risk.

Yes I mean invasive testing.

Great summary charleyparley

The high risk assessment, and I know exactly how it works, leads women to invasive procedures that risk miscarriage of perfectly normal babies. Its a risk to take, and no, its based on imperfect risk assessments of high risk when baby is fine but dies due to amnio or cvs.

Her sisters baby was fine, healthy, and she didn't opt for an abortion, she said others would in her position.

The high risk assessment, and I know exactly how it works, leads women to invasive procedures that risk miscarriage of perfectly normal babies. Its a risk to take, and no, its based on imperfect risk assessments of high risk when baby is fine but dies due to amnio or cvs.

I'm not sure you do understand how risk assessment works if this is your take.

1. All women over a certain age used to be offered an amnio/CVS. All. 100%. Based on no other risk assessment than age alone.

This doesn't happen anymore, because of the blood tests. Now they are only offered to those showing a high risk after a much more careful testing for actual markers of trisomies. This has reduced unnecessary testing and anxiety in many women.

(Here is a study from Korea showing that invasive testing fell from 60% of women over 35 having an amnio to just over 6% after the combined test was introduced.)

1. Women used to be offered invasive testing after the first trimester and a follow-up ultrasound suggested abnormalities based on expected growth charts and maternal risk factors alone. Now blood tests are done together with the nuchal translucency scan, often at the first ultrasound. This has also reduced the prevalence of invasive testing.

1. Experienced specialist OBGYNs can lower the risk of miscarriage substantially by prescribing magnesium to the pregnant woman to take three days prior to amnio/CVS and three days after. This reduces the risk of uterine cramping or spasms with is one of the risks leading to miscarriage. That's what mine did and he had zero adverse outcomes in 12 years of doing the tests. I turned down testing in subsequent pregnancies with OBGYNs who didn't follow that protocol and who had a much worse track record. I took a risk of a different kind in doing so.

1. If the blood test alone seems too little to risk an amnio/CVS on, you can also wait a little longer, have a later level 2 ultrasound and decide to have invasive testing done only after both blood test and ultrasound suggest a high risk of abnormalities.

1. Much as with weighing up risks of vaccination vs risk of disease vaccinated against, it's a question of maths. If your risk of an abnormality is 1 in 200 and your risk of miscarriage after invasive testing is 1 in 100, I wouldn't take that risk. If your risk is 1 in 10 vs 1 in 100, I would.

There is of course never any guarantee that one will be the unlucky 1 in 2 or the lucky 999,999 in a million. (Or in the pregnancy example, one could indeed be the one of the lucky 9 and then the unlucky 1. But the probability for that is lower than the one for being one of the lucky 99, especially since the miscarriage rate includes pregnancies with abnormalities which do carry a higher risk of miscarriage in and of themselves. Which means that if your baby is healthy, your risk of miscarriage after invasive testing is most likely also lower).

What it boils down to is that when weighing up risks like that you make a decision to risk an adverse outcome for the chance to gain certainty about a condition that may or may not be present which may or may not inform how you choose to manage your pregnancy thereafter.

You make that choice freely, for your own reasons, but you felt the necessity or you wouldn't have risked it. No one chooses invasive testing for shits and giggles.

he has the base instincts of a man and the understanding of a toddler
I used to see this a lot in my previous line of work. People love a cute little boy regardless of his mental disability. Not so much when he’s an adult man who wanks in public because he has adult urges but only a child’s understanding of what constitutes appropriate behaviour.

But I am saying to those who would judge a woman who assessed the road ahead and decided to take another turn, don't you fucking dare judge a woman for not being a martyr for your need for noble benevolence

I agree with this. Women don’t owe it to society to have children with disabilities. Their uteruses shouldn’t be utilised for the public good.

And I think it’s a testament to women’s people-pleasing socialisation that women are made to feel guilty about antenatal screening.

I screened for all my pregnancies and would have terminated if further testing showed there were proven genetic abnormalities. I don’t feel guilty for saying that.

A woman in the papers her child was deemed uncompatable with life literally wouldn't survive she had a termination but the first part didn't work so fetus was born alive it was horrific for her she wanted to raise awareness etc ....she got slaughtered online being called a murderer people were saying you could create more spinal fluid and correct brain defects that she shouldn't be a mum and have her womb removed it was awful

People love a cute little boy regardless of his mental disability. Not so much when he’s an adult man

This is one of the things that terrifies me about the future. Right now I have two very delayed toddlers but people passing don’t think too much about the fact that they’re not talking or paying them much attention or trying to get their penis out of their nappy.

The older they get the harder it will be. They’re likely to be bigger than me, so if they’re aggressive I stand no chance of avoiding injury.

I understand if people don’t want this to be their life - I didn’t want it to be mine. I can’t believe anyone can judge for that. Most people aren’t cut out to care for severely disabled children, but when you have them there’s little choice.

Nobody cares about carer burnout. If you can’t cope with your children, or make a mistake that leads to a tragic accident because you’re sleep deprived and completely out of reserves, you’ll be judged harshly. If a mother abandons her disabled children, she’d be condemned - and yet many marriages break down when severe disability is involved, many men leave and it’s almost always the women doing almost all the care then.

Apart from this, 2 of the 3 conditions screened for at 12 weeks are almosy always incompatible with life. 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.

slippery that’s utterly disgusting. Most TFMR are much wanted babies, I know a few women who’ve needed them and it has absolutely destroyed them to have to do it.

I agree with Kittens that healthcare removal is a dystopian nightmare and I’m not going to sit around giving it credence by “debating” something so clearly abhorrent. Every right minded person would agree with kittens Which is why I think it is necessary to talk about it, not report and delete posts that raise it!

I wasn't condoning health care rationing. Just pointing out that it already happens! That we, as a society, already accept it, or turn a blind eye to it. If we keep stifling discussions about the possibility of there being more then there will be more as we, wider society, won't have debated it and told politicians to sod off!

Which is why I don't agree with the reporting and deletion of the original posts!

SinkGirl much respect to you xx

Smotheroffive yes of course I know about the bloods. That's why I asked the question. Like many posters here, I know far more than I ever wanted to about prenatal testing, devastating diagnoses and life-changing decisions thanks very much.

I can't add anything to what CharleyParley has said about the processes and purposes of prenatal screening.

Smother, as you haven't provided evidence other than something that someone else said, I think it's fair to say that your statement that many women have terminated healthy pregnancies on the basis of screening bloods isn't true.

So really, really unhelpful to this discussion in all honesty.

How can it not? Given the process, and what others have also said. Also, my own personal experiences.