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.

When all said and done, it comes down to the state making a choice on behalf of a woman, rather than allowing that woman to make the choice herself. I can’t agree with that.

The risk of miscarriage following invasive antenatal testing is very variable depending on the skill and experience of the doctor carrying out the procedure.

Like all antenatal tests, they're optional.

I'm also surprised to read of multiple families with children with severe disability who aren't struggling. Those that I know most definitely are, increasingly so in the current political climate.

Everyone has a different perspective on risk.

My son was born with a condition that affects 1 in 80,000 babies. Most of the NICU staff had never treated a baby with this condition. So to me, 1 in 200 or 1 in 700 or 1 in 1000 doesn’t seem all that unlikely. You might have a different perspective. That’s where choice comes in.

Women have the right to choose.

Also, it is arrant nonsense that DS is the worst congenital condition out there. There are much worse possibilities, some of which are only identifiable at 20+ weeks, and they're probably the ones that trigger the tiny number of post 24-week terminations each year. Meanwhile, DS in potentially identifiable via testing from 11 weeks.

Stop playing into the pro-lifers' hands by buying into their idea that the pregnancies being terminated are just being terminated because of DS, and open your eyes to how truly shit the world can be. They like to point to women like Heidi. They're not so keen to point to other conditions.

sorry to hear of your struggles but your post suggests your DC don’t have Downs, is that right? My comment was about siblings of children with Downs.

A disabled child impacts upon their siblings regardless of what that disability is. They don't mean to, it isn't intentional, but when you have a child with additional needs they need additional time and attention which means less time and attention for the other children.

Now, unless parents of children with DS have figured out some magical parenting hack that the rest of us parents of disabled children don't know about, there is absolutely no way that there is not some degree of impact upon their siblings.

@Meltedicicle your post of 11.15am is very presumptuous, and, in my case, wrong.

I have known plenty of people with Downs Syndrome in my life, both professionally and through friends. Some very abke, some very much not. There was no strong fear of the unknown for me, other than would my son have a good quality of life or not, and would we be risking exposing his siblings to excessive pain or distress. We were not particularly worried about coping, though no doubt there would have been many challenges.

As it turned out, our baby's physical abnormalities were so severe he was highly unlikely to survive to birth. So in some ways an "easier" decision. But the discussions we had as we waited to learn more weren't "yuck, an imperfect baby, get rid" . They were, will our other children cope if he dies in heart surgery at age 6 (as my colleague's lovely daughter with DS did?) if he dies of leukaemia aged 14 - is it fair to him or them? What if he is very low functioning and can't communicate his distress? Is that OK? Who will care for him when we die?

Surely you can understand the pain of this decision - to call people who open up about it false, to call us liars? It's very unkind.

Oh dear @Meltedicicle you're missing an important point the stats that you refer to are of the babies that survive and are born. May ds babies don't, they miscarry or are extremely poorly in the womb.

Hoik and Sink and all those raised families with disabilities involve, I’m so sorry society lets you down. What you have to deal with is awful, and downright cruel.

Anyone who has heard or known such stories can never believe that a happy smiley “special babies are only given to special families” rubbish. It’s an unending slog, it’s cruel and exhausting. Anyone who judges a women for ending a pregnancy rather than endure that is heartless

Hoik there are not enough in the world to thank you for that post. Anyone who still doesn't get it after all that is either an idiot, a religious nut or someone who's had an empathy bypass.

FWIW I had a friend who was pregnant with a very much wanted second child, a sibling for her DD. She and her DH knew there was a chance her baby would have a genetic condition incompatible with life, because she and her DH were both carriers. Because of testing delays, she didn't get the diagnosis until 26 weeks. She terminated.

I will march in the streets, I will fight to the death for women like her to have the choice to terminate their pregnancies and Heidi and the shadowy pro-lifers driving her can all fuck off.

Yes,most people could raise a child with severe disabilities but at what cost? Mentally,physically,emotionally...for both parents and siblings.

It's literally the usual pro birther agenda of "you had sex,you deal with it", woman punishing bullshit dressed as a deeply emotional , we car about the disadvantaged and disabled package.

The cynic in me sees it as an agenda with the ultimate goal of restricting all other abortions further, so they again become the exception.

Shit in a chocolate wrapper is still shit.

It’s like a more extreme version of what I see constantly here when people talk of the added cost of having twins and how to manage it. You always get the people who say “everyone knows twins are a possibility so if you can’t afford twins and a big enough house, car etc then you shouldn’t get pregnant”. And this is always from people who don’t have twins.

People who just sign their kids up to one of the three decent schools within a mile or two of their house, book breakfast clubs and after school clubs and make use of family help for sick days etc... they have zero idea what it’s like.

Our LA want our twins to go to an unsuitable specialist school because it’s closer and cheaper. Currently battling (7 months in and counting) to get them into a suitable specialist school slightly further away which means no transport, which means an hour round trip twice a day (more if one of them is sick and needs picking up - highly likely with DT2). How can I ever get a job? Even if my own physical and mental health weren’t in shreds, it’s simply not possible to manage this.

And I can’t even claim carers allowance because my 20 hours per month flexible job pays too much. And even if I could, it’s a pittance.

When they move us from tax credits to universal credit, our disability premium will go down by almost £4K per year between them. But this is what people voted for, so anyone complaining about how unfair it is to terminate a pregnancy when the child is disabled can piss off, frankly.

I would never chose a termination FOR MYSELF.
I will fight forever for every other woman to have that choice FOR THEMSELVES and WITHOUT JUDGEMENT.

I have a disabled child and I work with severely disabled adults, a larger number of whom have DS (some with other diagnoses alongside some with ‘just’ DS).

These are the not the Heidi’s of the world. They are the forgotten and hidden of the disabled world. They will never not need daily care. They will never not need someone to keep them safe, manage their health and finances, housing and care needs.

I watch them sink into the hell that is dementia in their 40s and 50s. I see them struggle with their health, their weight. I see their families struggle to give them the best that they can manage and I see the distress when they finally can’t manage anymore because they are getting older themselves and the person has to move into residential care and that person doesn’t understand why and is distressed and begins to decline. I see the distress when parents become unwell and die and the now adult child does not understand and just wants their parents back, and the pain and stress that puts on extended family who then take over the care.

It is wonderful for Heidi that she is less severely affected, that she can advocate for herself and articulate well and live the life she wants to live, with a supportive family who have had the financial and emotional ability to provide that for her.

But she is not representative of all of DS. As another poster said earlier, many babies with DS don’t even survive to birth or die soon after. And a large majority of those who do survive WILL grow up to be the forgotten hidden adults I work with.

But they don’t look so good on the chat shows and podcasts and posters do they.

When MNHQ edited the title, they should have got rid of the over-emotive crap about ‘the world wouldn’t be a better place without Heidi’. How the hell is that an argument for or against abortion?

I watch them sink into the hell that is dementia in their 40s and 50s. I see them struggle with their health, their weight. I see their families struggle to give them the best that they can manage and I see the distress when they finally can’t manage anymore because they are getting older themselves and the person has to move into residential care and that person doesn’t understand why and is distressed and begins to decline. I see the distress when parents become unwell and die and the now adult child does not understand and just wants their parents back, and the pain and stress that puts on extended family who then take over the care.

This is exactly why I wouldn’t knowingly have a child with DS. People don’t talk about DS and dementia but knowing my child would deteriorate at the same time as I became “properly” old would feel like a ticking time-bomb.

I’m happy to see a paper that proves me wrong - that with better childhood stimulation, nutrition and stimulation adults don’t decline in their 40s and 50s - but the quick literature search wasn’t reassuring.

I just want to say thanks to those offering articulate arguments against the OP. I can't bear to read the full thread. Although I know I made the best decision both for my unborn child and our family, I still will carry the guilt and pain for the rest of my life. It was rather that than let my child endure a lifetime of operations and difficulties and never being able to lead a full life.

Btw my child did not have DS. But the relentless research I did when going through the situation was enlightening in that I realised DS is not just the high functioning kids and adults that you see around. It made me rethink my assumption I would continue a pregnancy with a DS diagnosis.

@Iris27 I'm so sorry you feel guilt. I hope you can eventually come to terms with your decision and realise that you did nothing wrong and have no reason to feel guilty or ashamed. You said you made the right decision. Of course no one will ever take the pain away. 💕

I’m so sorry Iris. I believe you did a selfless thing, sparing your child pain and carrying it all yourself. Please don’t feel guilt.

@Iris27 Please don’t let people ever make you feel guilty for the decision you made for you and your family.
I don’t feel guilt I just feel sadness when I look at my other Dc and see the life my Ds should have had.
But would never have had.

@Iris27 another poster who truly thinks you shouldn't feel guilt, sadness yes, but not guilt.
As I said in a previous post I applaud the bravery of mums like you who put protecting their dc front and center in these very hard decisions.

I send you love @Iris27

@Iris27 - you made a courageous and compassionate decision. Most people don't have to make decisions of this magnitude.

iris27

Much love and compassion from me too, @Iris27.

I think the world is a very upside down place, if there are people in favour of women being able to abort perfectly healthy fetuses, but would restrict the rights of a woman to abort if the fetus had chromosomal abnormalities.