As the First IVF Baby in the US, Here’s What I Want Others Like Me to Know
Dear IVF Baby, The past weeks have been tough, I know. With the recent ruling in Alabama, all eyes are on us once again. The decision handed down by the state’s Supreme Court declaring frozen embryos children strikes a deep personal chord for countless individuals and couples. This decision isn’t a legal abstraction; it’s a devastating blow to the hopes of those longing to start or expand their families through assisted reproductive technology.
At the time I’m writing, Alabama Governor Kay Ivey has signed a bill into law approving legal protections to providers of IVF services. But that doesn’t undo the court’s ruling that embryos should be treated like people, and the unknowable, potentially far-reaching consequences of that decision.
The court may have thought it was protecting the sanctity of life, but if it weren’t for the ability to create and store embryos, our lives wouldn’t exist at all. This moment feels like a retroactive attack on our very existence. Just recently, a friend a few years younger than I am, also an IVF baby, told me, “I don’t have the words to describe a decision that would erase me.”
As the first of us born in this country, I wanted to assure you that you are not alone in feeling all kinds of things right now.
On December 28, 1981, I became the first baby born in the United States via IVF. The treatment was controversial, and as-yet unproven in the United States, although there had been successes abroad with the world’s first IVF baby, England’s Louise Brown.
After my birth, doctors announced that I was a “normal” and “healthy” baby girl.
Healthy? Yes. But I’ve been working most of my life at the normal part. Normal kids don’t watch NOVA documentaries of how their parents conceived, do they? I’ve always struggled with the question “Do you feel normal?” This is my life; I don’t have another with which to compare it.
That documentary —Test-Tube Babies: A Daughter for Judy— is essentially the home movie of how I came to be, except my history is also the world’s history.
The first time I remember seeing the film, I was in a crowded room filled with doctors, reporters, and families of some of the first IVF babies. I was 6, thinking there was no way that little baby — the one everyone was fussing over — was really me.
When the film ended, everyone in the screen
ing room turned around to see my reaction. That’s when I was asked the weirdest question I’ve ever been asked: What did I think of watching a documentary about my own birth?
I answered with my own question: “Are all babies that slimy when they come out?”
Everyone laughed. Reporters scribbled. It was, of course, the perfect quote.
That was the point, wasn’t it? That, in the end, I came into this world a healthy baby — slimy, just like everyone else.
Since then, I’ve had a front row seat to the growth of an entire fertility industry: I’ve attended academic conferences since my preteen days, toured clinics around the world, and eventually became a health reporter at the Globe. Now, I’m a patient advocate for a preimplantation genetic testing company.
In that time, a lot has changed. Remember Octomom, the woman who gave birth to eight children through IVF? Her case sparked debate within the field that perhaps single embryo transfer should once again become the standard of care in most cases — and now it is. Now, egg freezing is common, but I remember touring one of the first facilities where eggs had been cryopreserved. Back then, it was highly controversial to even think of freezing an egg, and the facility was niche, only serving those about to start chemotherapy.
And, back in 1990 when the first preimplantation genetic testing for a monogenic disease was done (monogenic diseases include cystic fibrosis, sickle cell disease, and Duchenne muscular dystrophy), there was huge controversy. These days, if you have a family history of these conditions, it is common to undergo testing to screen for them. Even so, other types of preimplantation genetic tests are still hotly debated. So, the field is evolving. But we can’t turn back the clock.
I was a guest at the State of the Union on March 7th, and it gave me hope to hear that IVF was at the top of President Biden’s priorities. That night, it was clear to me that the whole country is paying attention.
But right now, I’m sad and angry. I worry that the hard work my parents and yours put in (not to mention the incredible doctors and scientists) will be erased. I’m sure you feel this way, too.
The good news for you — a member of this club we didn’t sign up for — is that you are not alone. When my parents went through this battle more than 40 years ago, widespread IVF was almost unthinkable. But now, there are some 12 million of us worldwide.
There have been many times in my life that I have wanted to just shut off the attention that came from being first. But every time it became too much, I found myself drawing on the words written to me by a neonatologist on staff the day I was born.
The good news for you — a member of this club we didn’t sign up for — is that you are not alone.
You are special, I remember him writing in a letter that he told my parents to give to me when I was old enough to read it. You are special because you were wanted from the very start, and you are special because you are Elizabeth, not because of how you were born. You are special because you are the child your parents so desperately wanted.