American Influencers who terminated for T21.

The posts I have seen about them on X are awful, they don’t deserve this vitriol. They have kind of brought it on themselves though by posting so publicly about it. I had a TFMR for T21. It was a horrible time and a truly horrible decision to make. Very very few people in my life know about it because I don’t want their judgment. Weirdly, I think you get more judgment for doing this than people do for just having a “normal“ abortion, simply because they don’t want to have a baby, which doesn’t really make any logical sense.

It’s all too easy to say “I could never do that” when you’ve never been in that position yourself. I even felt some judgment from my own mother, though she was outwardly supportive. I don’t regret my decision.

The vast majority of diagnoses happen around the 12 week scan so very few TFMRs take place at 20 weeks or later, for those who object to later terminations.

I'm in the USA. I can't help wondering if this might be at least in part an orchestrated, manufactured, and/or manipulated uproar. Keep in mind that there are primary/elections in full swing (although the schedule varies by state, June is a very heavy month) and midterms in November; either one could contain ballot questions impacting abortion law/rights and many will feature candidates with strong positions on the subject.

My views may be skewed because I'm in a state where abortion is still legal and relatively unrestricted, but from everything I know DS IS a common and widely accepted "reason" to abort, and is actually covered by established exceptions written into the law in some states that do have partially restricted abortion. Too often, it comes down to a stark choice between having THIS baby versus taking adequate care of already existing children. What financial and logistical support does exist in the USA is a full-time job to qualify for and maintain - and extremely precarious since federal resources have been decimated under the current presidency; there were literally weeks on end last year where people didn't know from day to day if the coverage they already had would be reduced or lost due to dynamic changes in Federal legislation. I could see a more appealing or self-convincing case for moralizing about this in a country like the UK with subsidized/public healthcare, where it could be perceived as a personal choice rather than a matter of potentially prohibitive cost and hardship. In the USA it just seems cruel.

There may be a handful of disability rights activists hounding this couple, and some people with a loved one with Down Syndrome who either cannot separate their personal circumstances from someone else's or genuinely think people are widely misunderstanding T21/DS and would act differently if they knew the "truth". There may also be hardline religious types, like the Polish President who celebrated the removal of the "extreme hardship to the life or health of the mother or child" exception to Poland's already restrictive abortion laws by saying that no matter how much the child, the mother, and the whole family suffered it was most important that a child with severe DS be baptized before dying. But I'd guess the large majority of hecklers and harassers are people who already support complete removal of abortion rights and possibly the criminalization of anyone seeking, providing, or assisting in obtaining or conducting an abortion. They're not worried about T21/DS, they're worried about reproductive autonomy and choice.

There has been some hate from all the usual troll-like figures but there’s also been some truly compassionate, nuanced debate from people on ‘the other side’. Groups which advocate for people with Downs have entered the chat, arguing their lives are worth living and a disability diagnosis doesn’t diminish their value in any way. Lots of parents who chose to have children with Downs have spoken up about value of life too. Those are important voices to listen to as well.

I should look for more falsifiable data - it's not a statisic I've had cause to check because it doesn't make any difference to anything I do, but it isn't far from my anecdotal experience (or as the kids say "lived experience", which in this post truth world I've had individuals try to argue trumps data)! However (as is always the case with "lived experience") my experience is not going to be truly representative of the wider world!

I work in a specialist setting and all our young people are Autistic with learning/ intellectual disabilities (a duel diagnosis is a funding requirement) and are referred to us because other settings haven't worked out (a lot come to us via exclusion from other settings or in patient psychiatric stays). It's the other way around than x% of people with trisomy 21 have Autism, and there are a lot more variables at play, but in our rather specialist setting there is a very high co-occurance rate (not 40%, more like 15% but it's the other way around with Autism and learning disabilities being the fixed variables).

In my career before moving to this setting I also encountered very high rates indeed of duel diagnosis, probably nearer 50% of people with Downs than 40%, but again, my experience is weighted towards more complex needs, so I've known fewer people with low support needs than might potentially be representative.

I screened for T21 and so did everyone I know. It was negative twice but one of my dc is autistic. There is no screening for that and I'm not sure there is a big diff for many with severe autism vs t21.

I don't like the couple and how they spoke about it, but people need to stop. The worst thing about this for me is the people who have themselves experienced a situation like this who are calling the parents murderers and selfish. I know what it's like to have a child with a grey diagnosis, I didn't terminate and my baby died very young and it wasn't a painless passing. Not everyone can cope, not everyone is in a position to raise a child with extra needs and people should be more respectful of this. There is very little support available once baby is born, society needs to work on that before we judge people

On the other hand, they should have maybe kept some aspects private to protect themselves. The internet can be cruel and judgemental people are very brave behind a keyboard. We're at a point in time where everyone knows this and tensions around abortion are very high in America especially

I think they were brave to share and the reaction shows not many people have done so because there is such stigma.

I think most people don't share because it's personal information!

Most people share with family and friends as appropriate.

Nothing to do with stigma.

In answer to the OP, I think the influencer was a total idiot in the way he shared their decision, but the people making death threats are lunatics (obviously).

I don't know who they are, but they also popped up on my FB.
When it comes to things like this, literally the only people who have an opinion that matters are the people who will be directly dealing with it.... in this case, the parents (or not).

I probably wouldn't share the information in public but I don't see what they have done wrong to be honest. Not everyone wants to raise a disabled child.

I don’t think anyone really knows for sure. It’s definitely more than was previously assumed but 40% sounds like a stretch!

That comes from a professional development training course if I'm honest.

More to the point, any and all kinds of attention can be monetised, because as this thread demonstrates people will click on a bit of juicy gossip and be served ads. And then be served more trash.

You can change the algorithm OP, just start searching for more wholesome stuff, or better still nothing at all.

I’m not sure this is a fair representation of what they have actually said really? They were speaking about their own thoughts and their own situation for their own child, it is hard to hear for those parents who have children with DS and while they have made a decision I don’t think I would have made personally I can’t disagree with what they have said- nobody hopes their child will have DS, yes some do live good and happy lives but some don’t, not everyone would choose that and that’s okay.

I’ve just started a thread on this where someone else linked back here. I think the response they are receiving is disgusting. So many people chiming in with photos and speeches about their own Down syndrome children or relatives…look it isn’t a competition. Some people are cut out for that and others aren’t. Not to mention family support and other factors. It’s nobody else’s place to comment especially with such harsh judgement, vitriol and death threats. It’s a depressing world we live in.

Great post. I’m interested to know where the “up to 40% also have autism” stat comes from, though.

I’m not sure why they were so honest.

I’ve seen lots online from people basically saying DS now can live totally normal lives now which is also not true. There is so much misunderstanding about it. No one knows how capable your child will be, I saw someone posting a girl with DS who had gotten a degree, she isn’t representative tbough of most peoples experience.
DH had an aunt who lived to a really good age but she was passed around relatives before she finally went into care, which was the best thing to happen to her. She was doubly incontinent her whole life, couldn’t write her name, could not be left alone. The other aunt who looked after her had her health totally ruined and was absent in her own children’s lives. Romanticising what it’s like really helps no one.

With usa though there also could have been a lot of costly healthcare (heart issues) which they may not have insurance for. Even giving birth can be expensive.

Then likely dealing with sen systems or schools.

If it had been UK realistically it maybe hard for both parents to work FT.

People forget DS is a spectrum. They’re not all happy-but- slightly intellectually challenged, but functional with assistance.

some have very severe cardiac and other abnormalities. That may not even be compatible with life, or they could be facing a lifetime of hospitals and surgeries. Early onset dementia is common.

they have every right to terminate if they don’t want their baby to suffer the severe effects of DS. Or even if they’re at the less severe end, what happens after the parents die? They can’t live alone, and social care in the US is awful- you’ve also got to factor in the cost of healthcare in the US, of paid respite care etc, that we in the UK would not have to think about.

what I don’t get is all the holier than thou anecdotes- they told me my child was at risk of down, but they’re perfectly healthy. As if the dr’s, chromosome analysis and ultrasounds can be wrong.

this attitude that a baby should be born regardless of the suffering it may experience is just wrong imo.

I saw a post written by a parent of a child who has DS. I can understand why those who have loved ones with DS would have found their announcement upsetting. And may wish to present a counter view of life in a family with someone who has DS. But I wholeheartedly believe in a woman's bodily autonomy and a safe and legal termination is a far better option than forced birth. The mass outrage is upsetting. Though it does bring home the point that sharing your whole life online may not be the wisest thing to do.

it is hurtful because it reinforces the narrative that DS people are fundamentally not worth a chance at life.Many live good and v happy lives but the whole statement and sentiment behind it is saying that they are not of equal value to children without the condition. They are less than and can be disposed of freely as a result.
His statement alone is tone deaf basically concluding by saying it will take time to get over it but they are excited at the thought of trying again in the future with hopefully a better outcome. V insensitive to parents and children with DS alike.

It is a private choice but if we say nobody can talk about that choice then it becomes even more of a taboo than it already is. People should be able to talk about their own choices without receiving abuse for that.

sadly in the age of internet more and more people seem to be forgetting you can disagree with someone without abusing them

💰

Obviously because they want or feel they need to.

No one's making them and it's a valid choice to make, why shouldn't they go public if they choose to?