American Influencers who terminated for T21.

Why are they telling people? Termination is a private choice and nothing to do with anyone else

Why share it, especially in the US, and especially in the current climate? They chose to share something so personal for clicks, they must have expected a reaction. If they are "influences" they would not be exactly naïve in understanding how all of this works? I would imagine they thought the views and comments (even negative) would be worth it?

I have sympathy for people facing this kind of decision and would never judge either way, but I despise people who would post something so traumatic online as a money making opportunity.

Why is it hurtful to people with children who have Down Syndrome, though?

As a mother, I'm not hurt when women have abortions because they fell pregnant accidentally and don't want a child. What I might be happy with isn't always what other people want.

Down Syndrome is widely misrepresented and misunderstood in the popular imagination, and that probably goes double for followers of social media influencers I'm afraid.

Through my work I know a lot of individuals with trisomy 21, and they are wildly different from one another. One of the people who has been most important in my life had trisomy 21 - she died (age 48) a few years ago and I still struggle with that. She was one of the most honest, charming, loyal , authentic and also frustrating people I've ever had the pleasure of knowing, and I miss her.

However I have also worked with non speaking, Autistic, doubly incontinent, physically unwell adolescents with trisomy 21 who have had almost no quality of life despite loving family and dedicated care teams.

There are three ways Down Syndrome happens, and those with the mosaic form in which not every cell has the extra copy of the chromosome are often the least negatively impacted and are the fairly articulate people seen talking on social media or even working as speakers and advocates. Obviously anti choice/ prolifers focus on the highest "functioning" individuals when talking about Downs.

Most people with Down Syndrome have non disjunction in which every cell has three copies of chromosome 21. Even within this form these is huge variety, with some individuals having a good quality of life and others having more challenges than anyone should have to deal with. With this form around 65% have heart defects as part of the syndrome. The chances of survival to age 5 are only around 60-70% for babies born alive with trisomy and a heart defect. Those born with heart and (also common) respiratory issues often spend much of their first year in hospital, and of course a horribly high number don't survive.

The extremely high rate of leukemia (around twenty times higher than in the general population) in children and young adults with Downs is also not much discussed by those trying to present a trisomy 21 pregnancy solely in a positive light.

Respiratory issues and autoimmune conditions often significantly reduce quality of life in adulthood, and early onset dementia is very common.

Autism co-occurrs with Downs at a very high rate (up to 40% of individuals with trisomy 21 are Autistic), and those dealing with both generally have extremely challenging lives, because often the coexistence of the conditions means the individual doesn't have the coping/ compensation techniques an individual with one but without the other would use.

It's not all sunshine and unicorns.

Well the support has never been there, so I don’t see how there could be meaningful stats. Any survey could only ask people what they imagine they would do in a situation where a) they were pregnant with and disabled child and b) there was excellent state support in place for disabled children. And what people imagine is always very different to actually being in the situation.

No idea who this is about, but influencers in genera literally put their lives online, so it’s not really a surprise when people have opinions and judgements on the things they do, even something like this.

I know a couple that are fairly big on SM as the live locally to us. They put their relationship and their children’s personal moments on it and then moan when people have opinions, say their children’s lives should be private etc. Everything is money and attention to them though, even the hard tings they go through, they see the engagement and cash it will bring them.

People judge, we know that, and if you put your life online, you’ll get more of that.

I have sympathy for them facing the situation they are, but none for the consequences of them choosing to put it out there to the world. No doubt when they do have children, the child will be online from birth to be monetised. These types are people are terrible.

America is very anti abortion anything in some states since the Supreme Court overruled legislation allowing it. Each state decides for itself.
Thirteen states virtually ban it altogether. It is not the same as the UK. Yet.

I disagree that opening up every element of one’s life to the scrutiny of online randos is some sort of act of radical social good.

I am telling you I have actually been in this situation and I couldn’t have given a fig what influencers had to say about it. It’s up to them of course if they want to share. But I don’t believe it’s doing society any good and I don’t believe it’s doing them any good.

There are so many more meaningful ways that we are moving towards normalising previously taboo elements of the female experience.

Maybe some would? But are there any stats on that? Because I know I wouldn't.

As for these influencers...well, I don't like the whole influencer lifestyle, and I think they should've just lied, honestly - but I can't fault them for knowing that they wouldn't cope well with a disabled child, and terminating.

Yeah, we just shouldn’t talk about breast cancer. There are charities who deal with that if you want support. Or mental illness, or menopause, or miscarriage or….

Just like we never used to, and women suffered alone.

It’s absolutely awful.

Absolutely. More women would continue pregnancies with disabled children if they knew the support would be there.

It’s just a shame those who are so keen to abuse this family for having to make an awful choice aren’t putting the same energy into better services for disabled people.

Raising a disabled child is tough. The toughest bit is the having to fight for every little bit of help and support they need.

Presumably they were planning on using the baby to promote their channel, pimpimg their baby (before they were even born). Sadly the baby has a SEN condition they feel they can’t cope with. The cynic in me says the decision to terminate was also brought about because T21 (I think that’s DS?) doesn’t fit with their picture perfect cookie cutter influencer lifestyle.

And I don’t know, I think that if you’ve signed up to share your life with followers as your way of life then there’s something, not noble as such but at least something a bit principled, with following through with the truth, no matter how unpalatable it may be to many of them.

But I do find it interesting their politics skew towards Trumpism given some of their previous posts, which seeks to erode the kind of choice they were free to make. Perhaps they will be self aware enough to consider that.

Everyone should have the right to choose.

Announcing it to the world. Weird.

A lot of it is from US fundamentalist Christians, from what I have been reading. They have a very different cultural landscape over there when it comes to termination and that’s reflected in a lot of the online discourse. Discussions of it in more UK-based forums has been a lot more nuanced.

I disagree. I think it’s important that people who are in their position understand they aren’t alone and they should never feel forced into making a decision they know isn’t right for them. I always maintained I wouldn’t ever terminate in that situation, but having raised a disabled daughter, and understanding just what is involved, how hard it is, I’m not sure I would have continued with a subsequent pregnancy if I was in that situation.

I love my daughter with all my heart, I love our life and she is absolutely amazing, I would never want to be without her. I have learned so much about myself and about the world since having her. But her disability is almost entirely physical, and she has a future where she will be entirely independent of us. As I get older, I am ready for that. Watching my elderly neighbours having to care for their adult child with DS, knowing how hard that is for them, I’m not sure I’d want to do that.

I agree with not sharing. I went to NCT with another older mum, she worked in a college and didn't tell colleagues she had amnio as she said they would condemn her. I worked in a police station and an officer asked if I'd had tests due to my age. I said no I had decided not to and I got a load of abuse. Much better to not share medical information as you will offend someone whatever you do.

I don’t know if they were brave really. I think they were backed into a corner because they’d been posting about the pregnancy from the start.

Stigma is nothing to do with why I didn’t share online and I’m sure it’s nothing to do with why most don’t. It’s simply a private situation. I wouldn’t post about it for the same reason I don’t post publicly about the death of family members, my bowel movements, or what I’m into sexually. Some things are private and that’s okay.

I don’t recall ever looking to influencers for solidarity when I was in this situation. There are charities specifically for supporting parents going through this. Anonymous forums like mumsnet are also really useful as people can be truly honest there - unlike influencers who always have one eye on their following.

Why is any of this in the public domain? Why do we know about this pregnancy and why on earth do we know why they have terminated? What is wrong with them? If you put your business online you have to expect some people will disagree with you and some people will criticise you. That's the price you pay.
They wanted attention and now they have it.

I find it an odd choice to share it. They could have just pretended they had a miscarriage.

I dislike "influencers" and the whole narrative around that, however I was impressed that they did tell the truth. I think esp in the US the narrative that women should just shut up and breed it's important to hear the other side.

I am firmly in the any time any reason camp and think they made the right choice for them. I would also have chosen termination.

I think they were brave to share and the reaction shows not many people have done so because there is such stigma. It means a lot of parents will feel less alone if they decide to make this choice.
A few years ago - no one shared about miscarriages and infertility - this changed and helped a lot parents who used to feel so alone.