Disability/abortion debate in UK

[Bretontops]

www.itv.com/news/meridian/2022-11-04/teenager-with-downs-syndrome-meets-rishi-sunak-over-abortion-laws

This cause went to the High Court and was rejected, so why is Rishi meeting with her?

I’m getting irritated with this ‘pressure group’ who basically want to ensure more babies with disabilities are born by stealth, by taking choice away from women. I’m also dubious about how many of these disabled people are truly advocating for themselves and how many have been ‘encouraged’ to do so by pro life parents.

In some cases the parents had the screening but slipped through the net - so they didn’t make an active decision to parent a disabled child, but now expect others to do so, to affirm their circumstances presumably?

Prepared to be told AIBU, but I feel we should be able to discuss it as it’s potentially our rights they want to restrict.

Quote from the article

"Having Down's Syndrome is no big deal. We can do anything we set our minds to with just a little extra help and support."

Clearly shows she has no idea what she is talking about.

I hate that young adults with DS are being used by their parents and campaigners to talk about things they know nothing about.

Heidi Crowter is the same. I'm angry that she has been put on TV but I am also mad that interviewers treat her with kid gloves, if she is challenging the law she should be able to defend her position and, "It makes me sad" is not a good reason to change a law that protects women in extreme circumstances.

It's the wrong question.

UK support for people with disabilities, for families with a disabled child is dire. Absolutely nightmarish.

Improve that and you might see people less afraid to have a disabled child. But either way, I agree with as late as necessary, as early as possible.

You can't make a defined list because that is not how antenatal diagnosis works. You are trying to predict the medical future of a foetus that you can't see or touch directly. You are trying to make predictions about quality of life 20 or 40 years in the future from very limited information. There's rarely any black and white answers.

I think that facing a medical termination, facing the uncertainty, is one of the most horrible things that you can go through. I can imagine that having the decision taken away from you, made by people who don't know you, must make it so much worse.

My mum chose not to have any tests on me as I was her first and they decided they knew the risks, but didn’t care. She did test for my brother as, they were both older parents so higher risk and were worried that the care of a child with high needs might fall to me as they got older or if they died. They are thankful they didn’t have to make that choice, but mum was glad that the option was there, if they felt they needed it.

But the practise is not. Many clinics exist where you can find out the sex of a child and terminate if it's female not what you want (or what your husband/his family wants). The ramifications from that are not as liberating for women as you might think.

I said it is not a reason to treat them differently. Some people don't want a non disabled child either and would also see them as a burden but they aren't allowed to "choose not take that on."

In this scenario would the woman be informed - can it ever be done without her knowledge? I assume not as she would have to be formally assessed ? Or can a gp do this covertly somehow and that is enough ?

When it comes to the screening tests, can they tell how disabled your child with DS will be? Or do they just know there's a high / low chance of the child having DS?

I don’t believe I am extremist, and I’m certainly not screaming. I simply refuse to debate my right to abort a pregnancy, because to debate it is the start of the road to eroding that right.

No one who is pro-choice, and wants zero restrictions on abortion, wants to see a 40-week gestation viable pregnancy aborted due to the baby’s sex: but we understand that (a) that would just never happen – who is making that choice, that late? Who is performing that operation, that late, for that reason? – but (b) if you restrict this never-going-to-happen scenario in law, you set a precedent for restricting all sorts of scenarios.

Saying you are open to all abortion, for whatever reason, as early as possible and as late as necessary, protects women. The law should be structured to trust women to make their own choice. Very few women have late-term abortions at all. I would argue that zero women have had or will ever have a full-term abortion on the grounds of the baby’s sex, and bringing it up as a “whatabout” is just another means of crowbarring open the “debate” on abortion to start restricting other rights.

@Asher33 the screening test will show if you have a high or low “risk” (I prefer the word chance!) of having a child with Down Syndrome nothing else. The 20 week anomaly scan will check for physical markers (heart structure/length of limbs/nasal bone etc). Nothing can tell you the extent of developmental/learning delays

You should be allowed to abort for any reason.

all terminations should be allowed up to birth.

This ‘group’ is alarming me with their reach at the moment. The High Court, meeting the Prime Minister. They lost their court case, that’s been decided (for now) so I’m not sure how they’re still managing such a high profile.

There have been many occasions where I have wanted to challenge the group members on social media but feel unable to do so as they often centre their argument around their own lovely child. And know anyone opposing it will therefore look heartless, because who wants to have such a debate in front of a picture of a gorgeous toddler?

Testing can tell you if your child has Down syndrome, but not how disabled they will be ( although you can see some heart problems, especially later in pregnancy ). I think if you could tell, fewer people would terminate. I think most people would be happy to raise a child that was going to have some degree of independence - it's the other end of the spectrum that drives a lot of decisions.

I agree that is a very important point.

It wouldn't, and doesn't happen that term babies are aborted, just because. Ever.

Babies who have DS, when their mothers choose TFMR are, overwhelmingly, born shortly after the dating scan. Anomalies that necessitate a late TFMR often can't, or aren't picked up until the anatomy scan, which can be anywhere from 18-21w.

When a mother chooses compassionate induction for a late term baby, it's because that baby will suffer and then die. And the mother cannot bear to watch her darling baby fade away in pain.

Once you have been through the anatomy scan. Then there's a very detailed and lengthy follow up scan in fetal medicine, and then often another "making absolutely sure scan". You are referred to a specialist medical team who discuss your baby's diagnosis with you. There is often a bereavement MW present. You are given the full picture. Sometimes tests need to be done another few weeks down the line, so you wait, and hope, and pray. And google, and find articles and websites. Any knowledge or facts that you can.

If the worst happens, and your baby continues to deteriorate, or their prognosis/diagnosis becomes even poorer, then you have to choose. It's not a real choice. You spend the time between appointments desperately hoping that their heart will stop on its own so you don't have to choose. It's already your fault that they're poorly, now you have to make this choice for them. The hell of it is something I can't accurately describe.

You have to give birth regardless. And you pack a bag for a child that will never come home, and go to hospital knowing that you will leave with empty arms. You take a fluffy blanket to wrap them in, a book to read them "guess how much I love you". Maybe the baby bubble bath you'd already bought and put in the cupboard with a packet of newborn stashed nappies that you picked up after your 12w scan. "Getting prepared" you thought to yourself at the time.

I was encouraged to have a D&E under general anesthesia with my second TFMR but was made aware that they were generally only done up to 15/16w so I needed to think quickly as it becomes riskier for the mother. I didn't choose that method with either of mine.

You are told that they cannot feel pain yet, not before 26w, they're not sentient, their brains haven't developed those receptors. And you take that and hold it and hope that they only ever know warmth, love, and your heartbeat. That they've never known pain, fear, hunger and never will

Between then and 22w you give birth without having to consider the injection.

Post 22w then it is offered to have the injection. Not necessarily for all conditions, some babies will not survive the trauma of birth regardless of their gestation.

You have to sign things to say you understand that your baby won't be given medical assistance etc and you swallow a pill to begin your labour.

You give birth to your precious baby, name them and begin memory making, hand and footprints, reading them stories, sing to them, just being with them. You apologize "Mammy is so sorry, she's so sorry my baby, she loves you more than you can ever know". And you carry your cold, dead baby up to a mortuary, you kiss their head, weep and hand them to a nurse who will place them in a cold cot . You leave, amongst happy, excited new dads with car seats, waddling new mums who are smiling, content. Then you begin to plan their funeral and start a life which is different from the one before. You are forever changed. You are not the same person. And you can never be sure, if you share your story, that the person won't react with disgust at you and never look at you again in the same way. You can never be guaranteed kindness in your loss and grief.

Nobody would choose this because the baby was the sex they didn't want or because they didn't fancy being pregnant any longer. Nobody.

It is unpalatable for people to imagine a fully formed baby being "killed", but you cannot imagine the horror of having to live it. These are not unwanted babies, they have been planned for, hoped for, prayed for. They are named and remembered and loved.

I had a stillbirth at 26 weeks, and it was a truly dreadful experience. Having to arrange a funeral and tell everyone what had happened then coming home without them, having all the usual post partum pain and then milk coming in? It was a deeply upsetting and traumatic experience and one that I'm still not entirely sure that I've truly made peace with many many years later.

I can't imagine that anyone goes through an abortion at that stage without feeling the same degree of loss.

It's not a choice that thankfully I had to make - my darling boy gave up the fight and we were spared the pain of having to make that heinous decision. I have enormous sympathy for any mother who has to do so.

Almost wish I hadn't read your post snotrag

Obviously I know it must be unbearably painful but you've written so eloquently, thank you

💐

And badger

💐so sorry for everyone who has suffered and is suffering

The governmental push to abort children with any kind of disability or because of their sex is about capitalism and economics. They don't care about women's rights. It's about valuing life dependent on what it can bring to the workplace. It's the exact same principles that put DNR sheets into older patients' files against their wishes and that lobbies for euthanasia even if extended to teens with depression.
Quality of life isn't just about whether you can work. A person's value shouldn't be judged simply on how much income they can produce or cost the state. But no-one is having those debates in public. Lawyers are having them behind closed doors.
Choices aren't made in a vacuum and the complete failure to discuss what people value in society is failing everyone. It allows people to ignore the shortfalls in funding for DCs with disabilities; the lack of MH support for teens; etc. It means billions can be given to the government's friends on fake contracts whilst families are told their DCs' care costs too much.

With no limit on how developed the baby is?

Having read about partial birth abortion I do hope that’s not what you’re advocating for.

I agree with all of the above.

That depends on the individual. Eg one feature of DS is congenital heart defects some can be picked up on US pre birth, but not all.

The tests cannot tell if someone will be able to live independently or be verbal or incontinent.

The tests cannot tell you if the bay will be blind, or deaf or both. Or if your child will get Leukemia which is more common in people with DS.

As early as possible, as late as necessary. Either we extend the abortion limit to all pregnancies - regardless of foetal health or we keep things as they are.

This is just another attempt to roll back abortion rights with an emotional twist.

Heidi Crowter is the same. I'm angry that she has been put on TV but I am also mad that interviewers treat her with kid gloves, if she is challenging the law she should be able to defend her position and, "It makes me sad" is not a good reason to change a law that protects women in extreme circumstances.

I suspect this is why they have individuals with DS doing the interviews- they know full well they can’t be rigorously challenged and that it would be almost distasteful to do so.