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.

YABVU

A friend of mine had to have a pregnancy terminated at 30 weeks because a severe anomaly was detected- the baby’s brain hadn’t developed. There was no way it would live outside of her.

She decided to have labour induced early. Would you have made her carry that baby- who died as soon as the cord was cut- for another 8 or 10 weeks.

The abortion laws aren’t actually about Down Syndrome. Who are you to decide what another woman does with her life. Disgusting.

Full term abortion for cleft palate?! I have a CP son what is wrong with people for fuck sakeangry

If you read the actual cases it is not 'just' a CP, it is Cp plus a number of other conditions.

I agree that a late stage abortion because the baby has a disability is an awful thing and we should try and reduce the numbers of people doing it if we can

Why? Why is it awful? It might be the kindest thing to do. It might be the best thing for all concerned.

I say this as a disabled person.

It's not Heidi taking on the responsibility or risk though, is it?

My DSis has severe non-verbal ASD. She's in her 30s and in full time care now. She is a lovely, charming soul but bloody hard work. I'm very aware in a few years the torch for her care passes to me.

The sacrifices my parents made were incalcuable. My mum's career haulted because she had no hope of wrap-around childcare so had to take low paid, part time flexible jobs. They still struggle for money now, and taking my DSis on a weekly trip out probably costs them £2-300 a month due to various things DSis will insist on.

I love my sister but my childhood was fucked up at times. Family events with my young DC are tricky now. She's my only sibling and I do sometimes feel like an only child. I worry about the future.

My baby sister had down's syndrome and severe heart issues. She was born to term at home and died at about 21 days in hospital, she was in an incubator etc. Our mother was very very sad and wished she had lived but I think most of us think it was for the best she did not survive given her range of problems, even just had she had only down's. I am sorry if that upsets other people but everyone differs and our current laws give us (i.e. women, not doctors, not men, not our children) choices.

She would have been loved and cared for and indeed my psychiatrist father put huge efforts into getting down's children out of isolated homes and into better settings with support even before we had our sister. We know we would have got back a lot of love from her too and made the best of it but it was not ideal. She was born just a year after the then new abortion act came into force although there were not then the tests we have today and I doubt my mother would have had an abortion on any basis (Catholic) - her choice of course and I respect that.

Our lives would have been very different had she lived and I am glad she did not live other than the fact it, of course, very much upset our mother.

I want women to continue to have the choices they have now even if those are different choices from those other women would make.

The views of people with DS are as valid as any other but do not trump the right of a woman to make her own choices.
Many children with learning disabilities are frustrated and angry and life for them and their families can be very difficult. For every Heidi there’s another child or young adult who struggles massively. I’m not saying they aren’t worthy of life but pointing out that there are multiple presentations of every condition and we can’t base laws on one

.I agree that a late stage abortion because the baby has a disability is an awful thing and we should try and reduce the numbers of people doing it if we can

Yes we should by ensuring that the 20 week scan happens on time, not 21 - 22 weeks. Ensure that the further tests, scans and appointments happen within days rather than weeks.

However with the best will in the world there is always going to be somebody caught in the time trap. 20 week scan delayed because of holiday / illness / accident enroute.
Follow up with specialist needs to be at a hospital miles away. The specialist isn't available to next week.

Before you know it women are over 24 weeks.

If DS with zero physical defects detected eg heart issues

What percentage of DS children have zero physical defects?
Remember without modern medicine there life expectancy was age 8.

It is very difficult and emotive, especially when faced with someone like Heidi but when all said and done, I agree with @Hoik. The numbers of late stage terminations are vanishingly small and I don’t believe for a second that anyone undergoes them with a light heart or without serious consideration of the consequences and alternatives.

Some abnormalites aren't picked up at the 20 week stage, or it's not evident until the child has repeated scans.

I grew up with a disabled brother, who knew nothing apart from adject pain and misery, before he died. I would never bring a potentially severely disabled child into the world.

sometimes, you don't even know how severe a child is affected until much later.

We noticed things when she was a toddler only (severe learning diffs + ASD dx later on). What would all those who would not bring up a disabled child or give them to for adoption do in that case?

Seems to me that people who think that living is always the best outcome must have had quite lovely lives. For some, living is constant pain and suffering. Why are there debates around euthanasia and people who choose this for themselves if this is not the case? Euthanasia is often the last resort for adults who find themselves suddenly in tremendous physical or mental pain, but some would be born with this level of pain and never know a life without it. Forcing those children to be born seems unspeakably cruel to me.

Yes, with many conditions you cannot know the severity. This makes the decision so much more difficult for the women having time make it.

I am so sorry to everyone here who has had to face this decision, and think it’s extremely brave to speak up here when this discussion must be so distressing for you.

We noticed things when she was a toddler only (severe learning diffs + ASD dx later on). What would all those who would not bring up a disabled child or give them to for adoption do in that case?

There’s nothing we can do is there - we have our children, we love them, we do our best. We don’t have the option of being unable to cope.

But if someone knows in advance that a baby has a condition which could cause severe disability, I cannot blame them for deciding they can’t do it.

We noticed things when she was a toddler only (severe learning diffs + ASD dx later on). What would all those who would not bring up a disabled child or give them to for adoption do in that case?

I’d love with them every ounce of my being, as I do my DC and try to carve out the best possible life for them.

Acceptance of circumstances beyond my control doesn’t mean I wouldn’t want to know about the genetic abnormalities that are commonly tested for.

Sinkgirl you speak so much sense!
And I completely agree with you.

35.5 weeks, I was seriously ill with flu, pumonia.
Inital assessments of me - we think we have her in time! Chest X-rays done with lead apron over the bump. They were considering c-section to remove the pressure on my lungs. But decided against it, was I strong enough for the Op?

The main concern was me.
Baby was monitored by doplier.

A week later I left hospital 36.5 weeks. Follow up appointment a few days / week later, I think we should do another scan.

By this point I would have 37 weeks. What fuck would I have done if it was clear baby had suffered from lack of oxygen???

I've never really thought about that scan and potential for bad news.

It's not just disabilities that can (and should) have the option of a post 24w termination.

A friend discovered at 23w her breast cancer had returned. She had 2 children already.

She had to decide between terminating the pregnancy to receive treatment, carrying on with the pregnancy but letting the cancer progress unabated, or take the treatment knowing it would have a huge effect on the developing baby and possibly need the trauma of a late termination.

But if someone knows in advance that a baby has a condition which could cause severe disability, I cannot blame them for deciding they can’t do it

^ This... I probably get flamed, but DH and I would have made the decision to abort pregnancy if there was a serious disability detected during checks. - This comes from a family with a severely disabled child (an uncle) that has grown into an adult needing specialist care 24/7.

Thanks to everyone who has shared their stories on here. I hope the OP, who seems to have posted and run, is still following the thread and has been given pause for thought.

Not everyone can cope and not all children with downs syndrome are high functioning. Many will have multiple problem's.
Taking away choice is not a good idea especially for cases where a diagnosis is confirmed quite late ( often post 20 week scan).
Imagine scan done a bit late, let's say 21-22 weeks a suspected problem identified to confirm further tests need to be done say a week later so 22-23 weeks then results come back a bit later. You are hitting the 24 week mark before the mother has even had a chance to think!
NOT EVERYONE WILL COPE! Not coping will mean a family falling apart ( often the father walks when things get difficult). Siblings can be highly affected for life, financial problems if a parent has to stop working to care for that child, mental health problems for the family. Also quite a few end up in care.
Yes for some it's fine and all happy and positive but please do not ignore the reality of having a child with additional problems for some families it's a hard road and we shouldn't force people onto it.

OK. So I've been on Twitter. And now I'm not to happy with Heidi.

Now I don't like her. Now I feel like she is a threat to women. A threat to the rights of my daughters.
Will Heidi be entering into any real robust debates? Will she come out and allow go face to face with the public to get a real range of opinions and then have to reply on the spot without any support?
Because I sure as shit wouldn't hold back!

Yes There is definitely a place in this world for People with Down Syndrome.

But no Heidi I don't want a place in this world for people who want to attack the rights of women and dictate what happens with their bodies to the point of causing them catastrophic mental and physical pain.

So if she puts herself in the second category I guess I've answered the OPs question.

Now I don't like her. Now I feel like she is a threat to women. A threat to the rights of my daughters

I don’t like to wade into Twitter, would you mind giving a short explanation?

From what I read she had just wanted same rights post 24 weeks (difficult imo because Downs sometimes comes with complications that are fatal post birth and we need to account for it, unfortunate for her to think about)

It's just streams and streams of Bullshit of people joyous that babies are going to be saved as it's disgusting that we murder them left right and centre.

Heidi is being hailed as some sort of saviour.

Some Americans have jumped in and you can imagine their opinions.

I shouldn't go back on. But Heidi can fuck off to the end of fuck now.

Very good point, @Arthritica

Clearly the current law can’t be discriminatory as it also permits abortion of non disabled foetuses after 24 weeks if life or health of the mother is at grave risk. Therefore no less favourable treatment so no discrimination.

Have the pro life lot got a view on that or is it OK for women like PP’s friend to just die?

I think Heidi is being taken advantage of

By all the pro-life/religious nuts who have leeched onto her cause to twist their own agenda which is, and has always been, nothing more than rooted in misogyny and trying to control women.

What a hateful ideology

She's Christian according to her twitter. So I guess she is already one of those nuts.

Please please for the love of fucking cake don't let this get passed.

She's Christian according to her twitter. So I guess she is already one of those nuts

Yeah I had a bit of an eye roll when I noticed that. So that’s what’s behind it all