American Influencers who terminated for T21.

[ScaredButUnavoidable]

Has everyone else seen all the hatred online for the social media influencers who have decided to terminate a pregnancy due to a diagnosis of T21?

I have no idea who the couple are but today my social media feed is full of really abhorrent articles, videos and posts aimed at them (and about termination in general) and I’m just horrified.

Unsurprisingly they are in America, but even so.

I’m assuming the couple have been streaming videos about the pregnancy since the start and this announcement seems to have sparked absolute outrage.

Ok, the Influencers must have realised that some people would be upset by their decision, but at the same time, those same people must understand that although couples choose to have terminations based on medical conditions it’s still usually a very difficult and upsetting decision for them to make.

Has anyone else seen it?
I’m deleting as much of it as I can from my timeline but it’s constant.
They are even getting death threats.

It’s like a witch-hunt, it’s disgusting 😢

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

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

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 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).

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 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.

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’ve had a (much earlier) termination myself. I’m generally pro choice although I think that choice should have a cut off of something like 12-14 weeks, and only thereafter for lethal abnormalities. 20 weeks is very late.

Their ‘content’ didn’t sit right with me at all. The way she started sobbing and saying about already choosing the nursery - wtf? And how they’re ‘excited to try again, and hope for a better outcome’, sorry but it all was all very soulless and self pitying.

At 20 weeks I would’ve put the baby up for adoption, unlike the UK there are actually waiting lists for adopting children with Down Syndrome in the USA because as disabilities go it’s seen quite favourably. But termination was their choice. I just think they should’ve kept it more private and dignified than wailing in a recorded video for ‘content’ before launching into a self defensive rant online about what a terrible life people with DS have and how they’re already thinking to the next baby and how they hope it won’t be disabled.

I sincerely hope their next child isn’t ’scan perfect’ but severely autistic or similar.

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 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.

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'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.

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.

That’s really interesting. Thank you for explaining your background. My unscientific “lived experience” comes from having a child with a triple diagnosis (DS/ASD/ADHD) and knowing loads of children and young people with DS but not many with a duel diagnosis (though some undoubtedly should have one!)

That is similar to my line of thinking.

They aren’t truly concerned about the value of life or the “worth” of a child who has T21, but are just using the story it as a platform to spread more hate about termination in general.

everyone has an opinion. Here’s mine; they do not just give out terminations willy nilly. It’s not easy to get a termination and it’s incredibly hard emotionally.
A friend had the screening and came back with a similar diagnosis. She continued with the pregnancy and ended up having a child with complex medical needs. She often now wishes she could turn the clock back and change her opinion, because the complexities of caring for her SEND child are so extreme, her life as she knew it, is over.
On the other hand I have two children with SEND, and they both are thriving and appear neurotypical most days. One has autism and the other has ADHD, and they cope well with our strategies.

I don't really have an opinion on abortion either way, but to be honest I found some of the couple's comments a bit tone-deaf. I'm sure it was a hard decision, and they have their own reasons and grief now to deal with but the bit where they said they were excited to 'try again and get a better outcome' was where I got a bit stuck with my sympathies.

I couldn't disagree more with the comments on this thread. I couldn't believe anyone could put out such a video, especially people who apparently have a large following.

I also can't believe they were allowed to terminate a pregnancy at 5 months for something that wasn't a risk to the lives of the mother or the baby.

But I would say that’s a huge risk to mum and baby. Surely the risk of PPD and PPP increases? And America is crazy, they’re highly unlikely to terminate that late in the game unless there’s something else in the medical diagnosis that makes the baby unviable that we don’t know about.

5 months isn’t an uncommon time for this, even in the UK. It’s about 20-22 weeks which is when we have the NHS anomaly scan, if DS (or other issues) are detected at that scan then there is the option of TFMR.

Down syndrome can be linked to intellectual disability but also other significant health problems like heart defects. TFMR is not just for cases where continuing the pregnancy would risk mum or babies life.

Sometimes I do wonder if many years down the line screening for T21 will no longer be allowed.

But this is exactly what I said above about there being more judgment for TFMRs than there is for normal abortion. Abortion is legal in the UK for ANY reason up to 24 weeks. Yes not many happen at that stage but not many TFMRs happen either.

I think people just see the DS actor in Call The Midwife or the cbeebies character and think that is what DS is about.

Oh that's extremely valid "lived experience" obviously! I think you hit the nail on the head with the phrase in brackets - undoubtedly some should have one! We get a fairly high rate of late diagnosed Autism in young people with congenital conditions, not because the Autism (and ADHD) weren't pretty obvious from fairly early, but because the child was in specialist education and had a myriad of medical appointments from early on due to the primary diagnosis, so following up on other suspected conditions formally wasn't a priority, the way it is where the isn't another explanation for atypical development.

We quite often get girls especially coming to us at 17 or 18 with a new Autism diagnosis "on top" of a chromosomal disorder (not exclusively T21) which was diagnosed prenatally or in babyhood. Often the Autism diagnosis follows a psychiatric placement unfortunately - puberty sometimes brings things into focus obviously.

We also have plenty of ADHD interventions for individuals without a diagnosis - we suggest diagnosis but where the young person is already in the right setting for them, parents or guardians rarely pursue an additional diagnosis unless they want to try medication.

How do we know it was 20 weeks? The scan photo they released on 29 March looked very early, more like a 7/8 week scan than a 12 week scan. And the trisomy screening is usually carried out at 12 weeks. Not sure when the termination happened but if it hadn’t then that would make her 16ish weeks by now?