To think that the world would not be a better place without Heidi *Content Warning - abortion/disability edited by MNHQ*

[bridgetreilly]

Heidi is 24 and has Downs syndrome. She is beautiful and brilliant and very articulate in explaining why the UK abortion law is discriminatory in allowing abortion up to full term where the child has Downs syndrome (and other non-fatal disabilities including cleft palate or club foot), when the standard limit is 24 weeks.

She's not the only one to think that. The United Nations’ Committee on the Rights of Persons with Disabilities’ concluding observations on the initial report of the United Kingdom of Great Britain and Northern Ireland made a key recommendation that the UK change its abortion law on disability so that it does not single out babies with disabilities. However, the Government has decided to ignore this recommendation.

Heidi, along with the mother of a young boy with Downs syndrome, is planning to sue the government for discrimination. She is amazing and I hope she wins.

I just wonder why one would take almost 40 weeks to decide that they dont want the child?

Where does that happen?

Surely if the woman has very bravely managed the entire pregnancy why not adoption?

Very few adopters are willing to take on a child with complex needs and health problems. Adoption is not as simple as a rosy-cheeked newborn being handed directly over to loving adoptive parents. The child would go into the care system and that is where the child would likely stay.

I just wonder why one would take almost 40 weeks to decide that they dont want the child?

Abortion at 40 weeks is vanishingly rare to the point of never actually happening. In 2018 there were 289 abortions carried out after 24wks, these will have been done as soon as possible past the 24wk mark. Late term abortions are not carried out because the woman doesn't want the pregnancy or has changed her mind. They are carried out because the child has disabilities or because the woman's life or wellbeing is in grave danger. As discussed, no one has a late term abortion for shits and giggles.

SinkGirl It appears some do.

@june2007 You don’t seem to have a clue. My brother’s catastrophically broken little body wasn’t an ‘imperfection’. His short life had nothing but struggle and suffering. And the impact on my family was disastrous, for a long time.

How dare you minimise his suffering and the anguish of my mother and the mothers of the unborn babies who are faced with making the choice my mother wishes she had with your dismissive talk of ‘imperfections’.

but shouldn't we also take into account how people with Down Syndrome feel?

No.

but shouldn't we also take into account how people with Down Syndrome feel?

No we shouldn't. The abortion laws aren't just for DS they cover all disabilities.

@jassyradlett I am sorry I can't see on the thread, did your brother have Down Sydrome?

I think that many of us have different experiences of Down Syndrome. Some of us have not seen the more severe cases of very ill children, which may be causing people to come at this from different angles.

My main experience: is my friend, who has a child with Down syndrome, and she is so happy and healthy. Which is why there might be a bit of a disconnect, with people's different experiences on here. People are thinking of their own scenarios. I am sure the person didn't mean to insult you

Anyway, the more important thing to say here is, I send you a lot of love about your brother.

My little boy was perfect to me. He had Downs Syndrome. Yes, I had a termination. We took his pain onto ourselves, forever.

When I held him, his little body was so distorted, undeveloped and swollen. I knew we had done the right thing.

Those with talk of imperfections and Nazis can fuck.off, frankly.

I think posters who fetishize disabilities don't know the reality of birth defects, or of caring for people who have impaired cognitive and physical function.

I think that abortion should be the choice of the woman in question and that aborting late for medical reasons shouldn't be limited.

I know that I'd not be able to manage a severely disabled child, and nor would I want to, if I'm honest.

@angell84 I have posted up thread. No, he didn’t.

The point is that none of us can judge another parent’s situation or choice based on our own experiences. A close friend went through a TFMR at 19 weeks last year. The details were complex and awful and individual to her. No experience is the same. No case is the same. Behaving as if they are is inhuman.

The poster spoke dismissively of people terminating because of ‘imperfections’. Not speaking from their own experience; casting judgement on others. That deserves calling out.

I think some posters on this thread are a bit naive and have no idea of the horrors that some women have to face and endure when it comes to termination. It’s not just about Down’s syndrome.

Anencephaly for example, hardly a mere “imperfection”.

, @SylvanianFrenemies. In my book that is an act of utter love.

In regards to the feelings of people with disabilities.... yes of course they matter. But let's not pretend that it's other peoples' views on abortion that hurt them more than the disablism, lack of services and care, lack of opportunities endemic in our society.

I also would like to hear how abortion has made Heidi, and maybe the rest of the Down syndrome community feel.

angell84, I'm not saying they shouldn't have an opinion. If Heidi and others want to go round trying to persuade would-be parents that there are alternatives to abortion and that having a child with DS is very fulfilling (which it obviously is in many cases), then that would be great. Everyone's entitled to their opinion.

What I object to is that instead of suggesting that women exercise their choice differently, they're intent on removing women's choice altogether and making women having a choice a crime.

Thank you @JassyRadlett, and everyone who has defended those of us who have experienced this terrible situation.

I had a tfmr at 13.5 weeks at the time of the decision I didnt know the baby had down syndrome. He had fetal hydrops and a cystic hygroma and was very poorly indeed. The fetal medicine specialist said she was 99% sure that it was chromosomal and that the baby was very poiy and would miscarry anyway. I took the decision to terminate and when I was in hospital I received the results of the cvs- baby had down syndrome. One of my 'friends' when I spoke to her told me that she would have had the baby if it had down syndrome, she had no understanding that this wasnt going to be that happy and relatively healthy down syndrome baby, but actually was unlikely to survive in my womb. We see the ones that survive, remember!!

"a logical conclusion....
Is that women have the legal right to end a pregnancy for any fetus regardless of its disability status at any point."

Exactly.
If DS with zero physical defects detected eg heart issues then the choice is made on basis of predicted learning disabilities. That is the uncomfortable reality. The point this campaign is making is that people with Ld such as DS can have good lives.
But you can never know the level of LD from a scan or blood test. People with my ds syndrome which can now be detected prenatally (microdeletion) also have wide range of ability from mild and able to marry and have jobs and their own children to severe. (Ds is severe end 24/7 care) .

You shouldn't be forcing women to have babies they dont want;

equally there should be more understanding that people with DS can be high functioning and all people with LD s should be accepted in society.

The problem is you literally cannot tell if your baby will be mild or severe from the diagnosis..as with any baby you have no idea how they will turn out...so based on diagnosis xxxx the pregnancy may be terminated even tho potentially that could be the high functioning child/model/artist etc . But decisions are made on risk assessment.

"Your unborn baby has xxx condition. They could be a model/actor/artist or they could require 24/7 care." You decide if you continue or not and you decide if you ok to risk either extreme or something in the middle.

There are also high rates of leukaemia, bowel malformations, diabetes (hard to manage for someone with LD) and early onset dementia in people with Downs. So medical risks come into it, even if things seem ok on scans.

@Embracelife but thats for the mother decide. In my case it was very very clear and in many cases it can be. Heart defects can often be seen on scans etc. But even if it's not clear, that's the choice for the person carrying the child, no one else.

Thankyou to Believe and other hcps who support women when they need it

Women should be able to end any pregnancy for any reason.

You don't know anyone's circumstances or what is right for anyone else's family

@rubyroost exactly. I am agreeing with you
The mother decides based on the information given. If no physical defects etc seen the decision is based on an unknown known. You know there is at least some level of LD. You not going to know how severe. You cannot know. The DS community is saying actually for many it s not that bad.

But the pregnant woman makes her own decision. So ...Why not allow any termination up to 40 weeks regardless of diagnosis or even no diagnosis..because even a "healthy" foetus could have severe ASD or other issues?

Maybe mother finds out while 30 weeks pregnant that her sibling's child has just been diagnosed very severe non verbal ASD which has become obvious at age three and there is a small risk her own child could have same level of ASD looking at family genetics....Surely she should also be allowed to say I dont want to take the risk ? I couldn't cope? And terminate?

"Th e DS community is saying actually for many it s not that bad".... That's a subset of the DS community. Many people with DS don't have the cognitive -communicative abilities to express a view.

I had a tfmr, my child had the most severe grade of cleft lip and palate, she basically had no top lip, or roof to her mouth, she also had other birth defects and DS. I live with the pain and sadness and grief for her. But I sure as shit won’t live with any guilt for doing what was best for my child and not letting her suffer.
My best friend also had a child with DS and he is now in college and doing amazingly well.
Both decisions were right for us. It’s not anyone else’s right to take that decision away.

www.ncbi.nlm.nih.gov/pubmed/30733618/

I find the discussions around DS all very limited to how wonderful and fulfilling their lives can be as children and young adults. No one talks about the fairly ubiquitous cognitive decline in middle age, with accelerated dementia and nearly all showing evidence of this in their 40s.

Who looks after these vulnerable adults when their cognitive capacity declines - their siblings or their elderly parents? It’s all very well to say it’s “ableist” to terminate a fetus with DS, but it’s society itself that’s ableist and unsupportive.

As indicated by sinkgirl and others looking after children with disabilities it’s relentless, exhausting and carers lose their sense of who they really are as people. I agree that women - and it’s usually women - who care for their children with disabilities are feted but any straying from the narrative of “it’s hard work but it’s worth it because I love them so much and I wouldn’t change it” is met with quiet horror. Mothers aren’t supposed to admit that it’s shit and they’re struggling and they’d like their old life back, thanks. I think it’s ok to opt not to continue a pregnancy that you know will make you a life-long carer of your disabled child. It’s ok for women to not be held hostage to the contents of their uterus.

I’m sure Heidi is very nice and has lovely supportive family and friends but she has nothing to do with my reproductive choices. It’s a shame she’s been taken advantage of by a group with an agenda.