A Life Worth Choosing

On prenatal diagnosis, disabled lives, and where our outrage should actually go

^{A note before you read: this post touches on prenatal diagnosis, pregnancy termination, and disability. If any of these are tender topics for you right now, please take care of yourself first.}

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By now, you’ve probably seen the news.

A YouTuber and his wife announced their pregnancy. Then, after genetic testing confirmed a Trisomy 21 diagnosis, they made the decision to terminate. Most families make this decision privately. They chose to share theirs publicly.

I’m not here to tell you they were wrong.

I am here to tell you I’m angry.

Not at them. Not exactly.

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When I was pregnant with our son, we got news too.

He would be born with a limb difference. Part of his left forearm and his left hand would be missing. We were told what that might look like, what it might mean, what our life could become. And like any family presented with a fetal anomaly, we were given options. All of them.

And I want to be honest with you, the way I always try to be honest here, I was scared. I grieved before he even arrived. I sat with the unknown in a way that felt impossible to survive.

But here’s what I also had:

Information. Community. People who had walked this path before us and turned around to wave us forward.

I had my husband. I had our family. I had time to sit with the fear until it started to loosen its grip.

And then I had our son’s beautiful little face, which made every single question disappear.

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I don’t tell you this to compare. I won’t do that. Limb Differences and Down Syndrome are not the same. No two disabilities are the same. Their impact is different. Their daily realities are different. The way the world receives them is different. To stack them against each other would be to do the very thing I’m raging against.

But what I will say is this: the conditions under which a parent receives a prenatal diagnosis matter enormously.

I remember that room. The way the air felt different in it. The way the ultrasound tech went quiet before she spoke. The way your brain tries to catch up to words it has never had to hold before. You are handed information in the most vulnerable moment of your life, often by someone who means well but who was never trained to deliver it with any kind of hope. Who hands you statistics before they hand you humanity. Who tells you what is missing before they tell you what is possible.

And then you go home. And you google. And what you find, at 2am with your heart in your throat, still does not reflect the reality of what a disabled life actually looks like. It reflects a medical system that has historically framed disability as deficiency. It reflects a world that has not yet caught up to the people living fully and beautifully inside of it.

So when a family sits in that room and imagines the future, and what they see is suffering, what they see is burden, what they see is a life not worth living, I need us to ask ourselves something hard.

Is that a reflection of their child?

Or is that a reflection of our failure?

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Here is where I want to direct our anger.

Not at a couple processing grief publicly in a way you might not have chosen.

But rather at the systems that have made disability synonymous with tragedy for so long that somewhere between 67 and 93 percent of Trisomy 21 pregnancies are terminated following a prenatal diagnosis.¹

A 2024 study found that more than 61 percent of parents receiving that diagnosis were told the news as though it were a tragedy, often met with an “I’m sorry” before anything else.²

Those same providers were significantly less likely to discuss life outcomes, support services, or what a full life with Down Syndrome actually looks like. Less than 40 percent did.

We have been handing families incomplete information in their most vulnerable moment for decades. And then expressing shock at the decisions they make.

If we had poured even a fraction of this week’s outrage into demanding better support systems, better resources, better representation of what a disabled life actually looks like, maybe the conversation would feel different for the next family in that room.

Maybe it would still be the same decision. That’s not mine to say.

But it would be a more informed one. A more supported one. One made with real knowledge rather than a system’s silence filling in the blanks.

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With all that said, I chose my son. And I would choose him a thousand times over, in every version of every life.

But I also know I was lucky.

Lucky in what I knew.

Lucky in who I had around me.

Lucky in the community that caught me before I hit the ground.

Not every parent gets that.

And until they do, this conversation is going to keep happening. In hospital rooms, in quiet decisions nobody films, and sometimes, like this week, in front of millions of people who don’t quite know what to do with it.

Neither do I, honestly. But I do know where to put the work.

And it’s not in the comment section of a grieving couple’s Instagram.

With love,

Anna

💌 Thank you for reading.

If this resonated with you — or if someone in your life could use these words — please feel free to share it with them. You never know who might need the reminder.

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1. https://obgyn.onlinelibrary.wiley.com/doi/full/10.1002/pd.2910 (Natoli et al., Prenatal Diagnosis, 2012)

2. https://pubmed.ncbi.nlm.nih.gov/37633732/ (Meredith et al., Disability and Health Journal, 2024)