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.

No but it affects all women. Let us have the right to choose.
What if it hadn’t been diagnosed until later? Do I just have to give birth to a sick baby against my will?
I was told the defects that my baby had would mean it wouldn’t live very long.
This is a very complicated area and the current law is fine the way it is.

I am not in favour of any restriction on abortion. I think that if the law were to change it should be to remove the restrictions after 24 weeks for all rather than imposing them.

Looking after a child, and then adult, with DS is incredibly difficult and a child with DS in the family will have profound effects on the whole family for their whole lives. The mother may well need to give up her job to support the child, and what happens after the parents die? Will the siblings feel that they need to care for their sibling full time?

Plus, that (tiny) number of children with disabilities aborted after 24 weeks have been aborted because after much heartbreak the parents have decided that they wouldn't be able to cope with the disabilities that the child has. If forced birth was implemented, those children won't be going to loving families that will support them to have independent lives - they will be going to shitty care homes with underpaid carers and all the risks that come along with that.

Finally, although DS is the disability that is placed at the forefront here, most of the children aborted after 24 weeks will be children with disabilities that condemn them to a short, painful life. It would be cruel to allow this.

Only a few posters have touched on a subject that I think it is very important.

Having a disabled baby is difficult, but many people cope. I find it a little offensive but I have heard people say cute Down’s syndrome kids are.

But not many people consider what happens when that (possibly cute) kid grows up but maintains the cognitive functions of toddler. The people with Down’s syndrome that we seen out and about in society, such as Heidi, are the high functioning ones. There are more cared for at home or in care homes who don’t have the same quality of life.

Older parents are at a higher risk of having a child with Down’s syndrome. Say the parents are in their forties when the baby is born. And sixty when that child becomes an adult in size and age but still at child at heart’.

Because of massive improvements in healthcare, a person with downs can be expected to live into their sixties in the UK. But that means their parents will be 100.

Parents cannot always care for disabled adults, no matter how much they may want to. That means it falls to family or social services. Consider the vitriol that is frequently aimed at social services on this board. Would you want them caring for your baby (no matter old that baby may be)? And if that adult with Down’s syndrome ends up in a care home, will the care home be good enough? Will people take advantage of them financially. What about sexually? People with Down’s can have children of their own. Do they fully understand the consequences and responsibility of raising their own child? Yeah, some do. But some are ripe for exploitation. Think of that case last year - a women isn’t even safe from pregnancy when she has been in a coma for 15 years!

As parents, we don’t just worry about keeping cute babies safe and ensuring children are well educated. We worry about them their whole lives. Hopefully, by the time we die, we have left our children in a position to self sufficient and look after themselves and their own families.

That doesn’t happen with Down’s Syndrome.

Please consider that parents faced with a diagnosis of a Down’s Syndrome in their child have thought about this and are choosing what they believe to best for their child, their other children and, at the end of the list, themselves,

@winniethekid, except there isn't a queue of people waiting for newborns who have DS. So while giving birth to a child, who is going to be difficult to find Foster carers for, is an option, adoption won't be. Not only will the child have disabilities to contend with, their won't be a secure attachment either. Children with disabilities really need someone fighting their corner, SS won't provide that. That's if Foster care is, needed, the child may spend their short life in hospital.

You also seem to think that giving a child up is easy on any of the family, or that neighbours, work colleagues won't judge.

I knew of a woman who made the decision to carry on with the pregnancy, she knew that her child had a range of syndromes and severe heart damage. She was lovebombed by a prolife movement. He lived for two painful years, completely in hospital, from six months old. He was bottom of the list for a heart transplant because even with a heart his prognosis wasn't good. But he had a stroke, so even if a heart did become available, he couldn't have had it. She stopped coping around the twelve month mark and stopped visiting. Of course no one from those that had encouraged her to go ahead with the birth was to be seen. It was, left to the GM and Auntie, I gave to GF Me requests for help with hotel accommodation, when he was moved around the country. They lived with the guilt of thinking 'why did she have him?'. It's destroyed both of them. The Mother was ruthlessly trolled online.

There's just been a preventable service users death in my city. Preventable if the one-to-one overnight package had have been ok'd by adult SS. Just as there are many deaths because disabled adult services and health care aren't adequately funded.

Don't push for enforced births unless you've already got the full funding in place for cradle to grave care. That includes a pot of money for families, which also provides, any, best available equipment, adapted housing, daycare centres and respite care, including holiday breaks.

@NotEverythingIsBlackandwhite, volunteer for Mencap, or get involved in children's charities that focus on those with profound disabilities or who are severely life limited/Children's hospices. Or just browse the Go Fund me pages. You'll have a better picture of things. It's shocking the amount of essential equipment that we don't fund.

That's a start, before this ruling is brought in, we need to release money to children's hospices and end of life care providers. Who at present rely solely on donations.

As the parent of two children with additional needs, @LangSpartacusCleg post really has hit the nail on the head for me. One of the things people don't realise about having a disabled child is the worry about the future. What happens if you get sick, even with just a vomiting bug for a few days, who will step in? What happens if your marriage can't survive the strain and you have to do it alone? What happens when you get too old to provide proper care? Will they ever live independently? If they can't then what will happen to your child(ren) after you die? Care home? Live with your other children? It's the sort of thing you can't think about too much or for too long unless you want to be awake all night.

It does make me feel very uncomfortable, I think in part it’s because there are so many disabilities that can’t be known about before birth, or even are caused by birth or develop after birth that to me it just doesn’t sit right and I think if you are going to have children then surely you should consider the possibility that they may have disability that means lifelong care.

There are so many unknowns in life, even with a diagnosis like DS that to abort an otherwise wanted child as a result just doesn’t seem right to me.

I think if you are going to have children then surely you should consider the possibility that they may have disability that means lifelong care.

A disability that was not known about prior to birth or that develops as the child ages or that is caused suddenly by life changing injury/illness is a totally different matter. That's life and these things happen, there is no choice but to deal with it as it happens.

Knowing about a disability in advance of birth means there is a choice about whether or not to continue along that particular path.

There are so many unknowns in life, even with a diagnosis like DS that to abort an otherwise wanted child as a result just doesn’t seem right to me

This is a very valid choice for you Sirzy, but it isn't right to make that choice for other women.

What if it hadn’t been diagnosed until later? Do I just have to give birth to a sick baby against my will?

If you didn’t find out about a pregnancy until 24 weeks, then you’d have to give birth anyway. But if you see DS children as valuable as others, then I could see how this law is discriminatory.

I personally don’t think the law should be changed fwiw but it’s a tricky issue than it seems on the surface though the real issue is that women aren’t being screened for DS and other fetal issues early enough. No one wants a late-term abortion, especially if you could have known and gone through with it earlier.

When i was pregnant with ds1 i had the blood test that showed he would have a higher chance of having DS

I refused the amnio because there was already a chance i would have a miscarriage and i didnt want to lose him

I asked if i could have the Amnio at 30+ weeks and the Consultant said ‘but you won’t be able to have an abortion then’ I had no intention of having an abortion...i just wanted to prepare everyone

Having said that i fully support a womans right to chose and although i am personally ok with the rules as they stand if any changes should be made i think the limit should be increased

Mango they are being screened for ds early enough. That’s the point. This campaign is based on something that doesn’t happen. People are screened for chromosome abnormalities including downs at 12 weeks. Structural abnormalities are picked up at the 20 week scan. Most downs is picked up early. If they decide to carry on with the pregnancy And then at 20 weeks find a sever heart abnormality they then may Have the option to think again. It’s is incredibly rare to terminate downs syndrome after 24 weeks. But it is less rare to terminate severe catastrophic brain abnormalities that have happened due to an infection late in pregnancy or severe spinabifida. If we go down this path it is these mother’s rights to choose that we will really be affecting. Are we to sentence mothers that don’t want to be mothers to children with severe life limiting conditions for the rest of their lives or to go through full pregnancies where they know the baby will only survive a few hours. What sort of society does that make us?

Threads like these are why I truly value mumsnet and the responses here. It's heartening to see people push past empty emotional rhetoric and think about the logical consequences to the rights for women.

I had many miscarriages and I STILL don't judge any women who purposefully end a pregnancy for any reason. I'd much rather they did that than had a child they did not want or could not care for.

As an autistic woman I also sometimes wish I'd had a peaceful death as a fairly unconscious, oblivious infant, rather than living constantly in a world which my body seems to hate. Living just for the sake of living isn't everything.

Many DS babies have holes in the heart.
How many survive without operations to repair it?
How many people want tiny babies operated on?

The UK isn't the best at supporting disabled children, families or adults who are disabled. Sometimes families hit crisis point and need urgent help and the safety net just isn't there without a major fight that the family could do without.

As others gave said no body has a 3rd tri abortion without good reason. Probably all who are aborted late are much loved and wanted babies, with conditions which aren't compatible with life.
Heartbreaking for both parents!

Perfectly put @olivehater

If there was ever one thing that made me MORE ardently pro-choice for all women in every circumstance it was reading the stories of the women of the 8th. In Her Shoes. It's powerful reading, real life stories. And I'd hope it would be very difficult to rail against late term abortions after reading some of that heartbreak and agony.

@dairyfairies, yes, I do, in that it represents the reproductive choices of women. Which, having grown up in a country where abortion was illegal, and spent my student says campaigning for women’s right to choose, I recognise the value of.

Might I ask whether the people who are shocked by the Iceland stats feel that Icelandic women should be encouraged (or forced?) to have children with developmental and physical disabilities? Or indeed to continue with any pregnancy they don’t want?

The discussion is not about autism, it is about Downs Syndrome.

Autism can be rough, two if my children are autistic and part of the reason we are not having any more DC is due to our increased chances of having another child with autism and we felt this would negatively impact on our ability to meet the complex needs of our existing children.

Autism is a spectrum condition and affects every person differently but it is not associated with life-limiting physical co-morbidities.

And even if autism could be screened for in pregnancy it would still be the woman's choice as to whether she continues.

I think the answer is to improve social care and offer better support to people with disabilities and their families. If people felt confident their child would be accepted by society and they would be provided and cared for for life, they might consider continuing with the pregnancy.

I feel it's a bit of a vicious circle, and the fewer people born with DS, the bigger the fear for someone finding out their baby has DS and not wanting to continue the pregnancy.

@BoudoirPink The Iceland stats were wildly misread/misrepresented and sadly Icelandic women do actually have to put up quite the fight for abortion after 18 weeks.

What about stupid children? Should we start measuring IQ in the womb?

After all you could have a perfectly healthy but incredibly stupid child. Then you'd have to care for them a lot more than usual, right? Or ugly children, ugly people have a lower quality of life. Raise the abortion limit for ugly babies.

Ffs you can't just have a chat about why you think it's ok for babies with certain conditions with vastly varying outcomes (non fatal) to be treated differently to those without and then be surprised when people are upset by it.

Either remove the limit entirely or set all to 24 weeks barring medical emergencies/fatal conditions.

We wouldn't all have preferred a nice quiet death in the womb.

Ah crap, keep forgetting the law changed last year :D 22 weeks for Iceland now.

We wouldn't all have preferred a nice quiet death in the womb Sometimes I feel this so hard. On Mondays in particular! :o :o :o

I think this is a very difficult choice for many women .The truth is that life is hard anyway, and having a child with a disability makes it 10 times harder .My friend has a DC with Downs ,and they are lovely but very hard work .She works shifts , and during the day has had to care for DC out of term time on her own .With 2 other DDs she has her work cut out! The other thing is that as they reach the end of full time education ,choices become far more limited for them as well .I think Abortion is a bit like Divorce no one wants to have one but sometimes its for the best (Ugh really hate that saying!) Unless you are in that position its impossible to say what the "right thing "to do is !