Mum of baby with Down's syndrome suing government over abortion law

[SharonasCorona]

The mother of a baby with Down's syndrome is suing the government for allowing disabled children to be aborted after 24 weeks of pregnancy.

After 24 weeks a woman can have an abortion if she is at risk of grave physical and mental injury, or there is a severe foetal abnormality, including Down's syndrome.

Maire Lea-Wilson says she was encouraged in hospital to abort her son, who is now 11 months old. She felt the assumption was "that you would want to abort a child with Down's syndrome".

I’m in pro-choice, but I didn’t realise you could abort disabled children until birth. It’s shocking that a woman with a healthy baby with Down’s Syndrome was encouraged to have an abortion, right up until she carried the baby full term.

Does a DS diagnosis take a really long time? Obviously one of the main things the 12 week scan is for is checking for signs of DS

The main reason for the 12 week scan is to date the pregnancy and check it is growing in the right location. They can pick up DS at the 12wk but not in every case. In some cases DS or other conditions are only first seen at the 20wk scan.

The 20wk anomaly scan takes place anywhere between 18wks and 22wks. If you're not seen until 22wks and they see a potential issue needing more investigation then you need to wait for an appointment for this so say 23wks.

At 23wks the problem is discussed in more depth, diagnostic tests are done.

At 24wks the results are back and it is confirmed, a decision is needed.

Should that decision be made there and then before it can be properly thought out simply to stay under a 24wk limit? Or should a woman who has had bad news about what is, by that point, more than likely a very wanted pregnancy be afforded the time she needs to go away and let it sink in, to get support and advice, and to think before she makes a decision?

With smoking your costing the NHS this leads to people being up on heart wards having to have operations and sometimes this happens abroad too costing thousands. It cost the NHS far more money. It also affects the family as they are the ones who come to visit the sick.

In that scenario I get what you are saying for sure.

I just know that they do the nuchal fold test and then explore further if a higher than normal reading is offered. For my last pregnancy I was also advised they would do a combined screening with a blood test. I just wasnt sure if it actually does take a full 12 further weeks for a diagnosis. Tbh I would have to look into it as it does still sound slightly hypothetical- haven't seen anyone say it definitely does take that long. Not saying it doesn't though!

I know people with DS who are happy and content. They are disabled intellectually disabled but they are happy.

They are that way because they don't know any different. The whole 'they are so happy and cute' romanticised idealistic view of children/people with DS is so unrealistic. Also when they understand they are different and can't do the things many non-DS can do (ie have children and live completely independent lives) it is truly cruel. People who have had no experience with that idealise it, and don't want to accept that it is truly a cruel thing to do to a child. It is not the easy laid-back happy 'existence' (which is basically what it is because they cannot lead a normal life) that people want to think of it is. Someone on another thread tonight (about the same topic) mentioned about a female relative of theirs with DS who has severe needs, is constantly not understanding what is happening to her, lives in a care home, wears a nappy, stares at a wall and is non-verbal. I'm not going to apologise for saying that is no life at all. And to deliberately inflict that existence on any child is cruel and selfish.

Again though @Timekeeper1 that's your view that a disabled person wouldn't want to be born or would be inherently unhappy. I don't agree people who are born disabled cant have a content life, the same way as I don't believe people who become disabled have to throw in the towel and have a shit sad remainder of their years. Also you cant know the severity of a congenital disability until someone is born, the same way you can't know if you are going to have a life altering accident or illness. That is the lottery of life though and to say people who are born disabled are guaranteed to have a pointless or harrowing life and that it is selfish for them to be born is genuinely beyond me. I just do not share that outlook on life at all.

Also as far as I'm aware DS is not usually life threatening in that a baby is unlikely to survive, so again it's quite subjective as what is considered an "acceptable" reason to terminate a pregnancy

DS isn't "just" DS and very often has many comorbidities such as heart defects, vision problems, hearing loss, thyroid problems, blood disorders including an increased likelihood of developing leukaemia, learning difficulties, low muscle tone, hearing problems, dental problems, neurodevelopmental disorders such as ASD or ADHD, spinal problems, sleep disorders, digestive problems, epilepsy, metabolic syndromes, early onset dementia... do I need to go on?

Most people with DS will require some degree of daily care from others. As it's a spectrum condition it is impossible to predict in advance how much care will be needed. No woman should be forced to take on that level of commitment if she does not want to.

It's actually incredible to me that you feel so strongly about it.

If you personally know a family who has a DS child, the siblings resent it (it is no life for them, sacrifices have to be made in their childhood, then in adult years they are expected to quit their own lives/career/freedom to take in said person with DS after the parents pass away or choose to institutionalise), the stress on families, if you had any idea of the reality behind the idealised poster image of the 'happy' DS, it wouldn't surprise you. At all. Seen it, been the supporting shoulder. People really need to understand it is not a happy or cute life. It's barely an existence in some cases, and especially for any poor siblings that have their childhood shortened/interrupted, or for the exhausted parents who can never just live a normal life, having holidays like anyone else etc. No one would wish that lifestyle or life sentence, rather, on anyone. Time the stark reality was seen.

So, yeah. Kinda personal to me. The fluffy cutesy 'happy DS' image really upsets and frustrates both myself and people who have actual experience in this.

I don't have a romantic view of disabilities. I don't like to share but I do have someone in my extended family who had DS. I'm under no illusion that their are stark realities, but the situation you describe (particularly the sibling element) is not a reflection of life everyone, I would say it is a very extreme example of all of the possible negatives. The man I know has 2 NT brothers and they certainly do not resent him. They love him and they are compassionate people. They have their own lives and families.

It's great to get your point across but focusing ONLY on the negatives is not an accurate reflection of real life. It's not enough to warrant saying no children with disabilities should ever be born.

reflection of life for* everyone

The man I know has 2 NT brothers and they certainly do not resent him.

You really cannot know that. Honestly, you really can't. It's what you think (believe me relatives don't normally let on to others because of the taboo, they will be seen as selfish and not supportive, most don't dare to say how the truly feel deep down) or want to think, but that is really not reality. Believe me, it is not reality that they have zero resentment for him. I've been privvy to close confidential disscussions, I've seen family dynamics, and trust this, his brother most definitely have resented him at some point. You haven't addressed who will look after him? Are the brothers expected to?

I agree with the posts I have read so far.
She choose not to abort, and that is fine. But other women may want that choice and it should not be removed.
I personally feel uneasy at the thought of later term abortions, but I still support every single woman's right to access them if they choose to.

Timekeeper1

That’s your experience of it though. Other people will have a different, a more positive one because they are different people, have different relationships, personalities, expectations, coping mechanisms, resources etc.

You’re coming across as very patronising, like others have no idea or experience of this. Again, your experience is only your experience, it doesn’t apply to all.

Posted to soon. Was going to say It's not enough to warrant saying no children with disabilities should ever be born.

Why would you actually want and choose to bring a disabled child into the world?

but focusing ONLY on the negatives is not an accurate reflection of real life

No but there are no positives with DS.

Objectively though they do have their own lives. With all due respect you aren't aware of my relationship with these people and I think you are projecting if you think you can say with confidence that their love for their sibling is just a facade for other people. And so what if their is an element of resentment or jealousy? My brother resented me, I am the youngest. Doesn't mean we aren't all psychologically healthy adults now. I feel like you are projecting your own view of one family that you have been "privy" to and have used to make the huge sweeping statements you have made on the thread.

I think I'm going to leave the thread now, not in a flouncy way but what I was hoping was a multi faceted debate has become a tit for tat "I know more than you do about families with DS" with a single poster.

I stand by all of what I've said so far.

No but there are no positives with DS.

Wow.

@CloudyVanilla I agree.

Again @Timekeeper1 because other people have different views on the value of life to you. My partner and I have always said we would not abort a child with DS because we do not believe it is necessary and that we would put up with emotionally and practically the burden that that would entail. Believe it or not some people have different views on the value of life than you do, and some people genuinely don't believe that being disabled is a reason to have no life. For some of us, a disabled existence is better than a life over before it has started. Genuinely. I can see you struggle to believe that. But it is the case.

Again I ask what happens after the parent has passed away? What would you and your partner have decided on the chance that the DS child survived you?

AlwaysAnEmptySpaceOf course a serious lifelong disability doesn't have positives. Not sure why that requires a wow, but whatever.

Timekeeper1 is getting a bit of a rough ride and I don't think it's entirely justified. I don't agree about withholding benefits and social care, that removes choice as its financially and socially coercing women into being more likely to choose an abortion, but I agree that it should be acceptable to abort a pregnancy on the grounds of disability and no one should be made to feel guilty for saying "I don't want to raise a disabled child".

Surely doctors have to be able to give medical advice and even put patients under a little pressure to follow the best medical advice.

Clearly the foetus was not healthy as it had Downs syndrome and so the best medical advice is usually to have an abortion. But its right that no one is forced to have an abortion. Its not black and white.

The solution is to give all women the right to an abortion at ANY time for any reason.

@Timekeeper1 some DS people don’t live with their parents I’ve met people and they live other DS people. You cannot assume every situation. Also a care service would be involved some of these points are exaggerated. We are not living in the dark ages anymore things have moved along quite far.

@Timekeeper1 is getting a bit of a rough ride and I don't think it's entirely justified