Ellen Weir Casey is the mother of Colorado’s first “test-tube baby.” Her debut memoir, “Unstoppable: Forging The Path To Motherhood in The Early Days Of IVF,” is the first-person account of a patient’s experience in the dawning days of assisted reproductive technology. Casey is a passionate advocate for the family building technology of IVF and an active supporter of a woman’s unrestricted access to health care. Casey earned graduate and undergraduate degrees from Colorado College and is an alumna of The Aspen Institute’s Summer Words writers program. An award-winning educator, she authored a primary school curriculum, “Peace In Our Hands,” which introduces young children to the lives of Nobel Peace Prize winners to encourage peaceful problem solving as a way of life for students. She lives in the foothills of Colorado Springs.
More than 40 years ago, the author, a Colorado Springs elementary school teacher, began a journey that ended in 1983 in one of the earliest successful in vitro fertilizations, commonly referred to as IVF, in the country.
Casey’s memoir tells the story of her singular determination to have a baby, meticulously detailing the IVF procedure from a patient’s point of view, long before it became the most widely used reproductive technology for women with damaged or missing fallopian tubes.
SunLit correspondent Kathryn Eastburn sat down with Casey recently to discuss the reasons behind her decision to chronicle her experience, what she hopes readers will take from her story and how the U.S. Supreme Court decision to overturn Roe v. Wade and the protection of a woman’s right to abortion has also placed family-building procedures like IVF in potential legal jeopardy.
The interview has been edited for length and clarity.
SunLit: What made you decide 37 years later to write your memoir of having an IVF baby? Why is it important for people to understand this procedure?
Ellen Weir Casey: I was at a party about five years ago and was introduced as the mother of Colorado’s first test tube baby to a group of young men. It was so strange, but they were fascinated. They asked me, “How’d you do that before the days of the internet?”
I realized I had a story of historical importance to tell. Mine is the only book written by a mother of one of the earliest IVF babies. Back then, people had heard only about Louise Brown, the world’s first IVF baby, born in England, but they thought of it like Dolly the Sheep or something, a scientific experiment that wouldn’t necessarily happen again.
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A lot of people still don’t know what it is, even after all these years, when a fifth of couples wanting children experience infertility. People still ask me things like, “Did you ever wonder if the baby was yours?” Unless they have a family member or themselves who need to access medical treatment for infertility, most people may know very little about it.
Long before you wrote this book — laying out your experience of infertility, damaged fallopian tubes, microsurgery, other medical procedures and, ultimately, IVF, then an experimental medical procedure that very few women had experienced — you were an outspoken advocate for the procedure.
Yes, when I had my daughter, I got such national press for having her. I took that success as a platform from which I was able to share information with women and families around the country. I went on talk shows. I made my private battle public because I wanted people to know that IVF was here, that they still had a chance to have a baby. And I wanted IVF to be explained well enough so that Elizabeth wasn’t viewed as an anomaly, not just a perfectly normal, desperately wanted child, as I said in the Prologue to the book.
When I was doing IVF, I didn’t know many things that I know now. There was nowhere I could go to read about my doctors; I couldn’t find any information about how it worked. Imagine, I was 30 years old, walking into a radically innovative program having never even heard the terminology in vitro fertilization; they were just called test tube babies. It was so rare to have an experience that so few other people had.
You were accused then of “playing God” and got lots of criticism based on people’s religious beliefs and various attitudes about reproductive technology.
It’s true. It was a time when people didn’t talk about having miscarriages or not being able to get pregnant. It was verboten to talk about in polite society. And it was tough when I had Elizabeth, especially because I’d married into an Irish-Catholic family. My mother-in-law wasn’t supportive of me having a baby conceived in a lab. She was horrified.
But I’m in a unique position now because I’ve chronicled so clearly and advocated so loudly for infertility treatment. And I’m avidly pro-choice, too.
I can remember standing in my kitchen when I was going through my infertility experience and a neighbor said: “Maybe God doesn’t want Ellen to have a baby.” Infertility was viewed as an indictment on the woman, as God’s punishment.
Now, infertility treatment is a regular part of ob-gyn practice. It’s women’s health care.
Women need to know that other women went before them, opened doors for them by being courageous, by speaking power to truth and finding ways to go around power. Young women who’ve read the book have told me they’re shocked by what I went through.
What do you mean about going around power and speaking power to truth?
In my book I talk a lot about being so careful back then, living in a man’s world. I knew that men had all the control over me and my body. There were no female gynecologists then. I had to be very careful in my mission to have a child for fear they could pull the plug on my efforts at any time.
In the span of history, this was just 40 years ago and look at how things have changed. Even contraception was new. I was talking with some old college friends when I was researching the part of the book on contraception. I said, “Did you know the pill was illegal before 1972?” They didn’t. I remember having to go to my doctor for birth control and putting on a ring, pretending I was engaged to get the prescription.
Since the Supreme Court decision overturning Roe v. Wade, there are fears circulating among doctors and infertility patients about the future of IVF and other medical procedures associated with reproductive health, like treatment for ectopic pregnancy that can lead to the mother’s death if not treated. With IVF, laws could prohibit the destruction of frozen embryos, physicians could be prosecuted for embryo destruction if they don’t implant successfully, patients could have to pay fees to store them indefinitely, screening of embryos for genetic diseases could be at stake. There are so many unanswered questions. What’s your take on all these gray areas?
The day they repealed Roe, we knew it was coming. Still, I couldn’t even speak. The implications are terrifying.
I had two ectopic pregnancies and they were harrowing, ultimately causing my infertility. Now, the most common drug to treat ectopic pregnancy is methotrexate, the cancer drug that stops cells from growing. It ends the pregnancy safely at an early stage. From a doctor’s point of view, their job is to do no harm, and allowing a patient to endure an ectopic pregnancy that can lead to sepsis, they’re putting a patient into a lethal situation.
These are real concerns, and that’s why we have to ensure that state legislators have input from women’s doctors so that they write the laws carefully enough to not allow that to happen.
I’ve been very politically active, working with RESOLVE, the national infertility association, lobbying Colorado legislators to include three rounds of IVF for women with infertility in health care provisions. Now aspects of the procedure’s legality are at stake in some states.
I speak to women’s groups, educated women, and I tell them they need to pay attention. In the last few years, 100 personhood bills have been filed in state legislatures. I’ve explained that this is the way of thinking that the minute an egg is fertilized, whether it’s inside or outside a woman’s body, it has the same rights as a living, breathing, walking person.
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As for disallowing genetic testing on embryos before implanting them, screening for disastrous genetically inherited diseases, IVF is used now not just to create a family but also so that women can create a healthy family. Those screenings and discarding of embryos with conditions like Tay-Sachs, Huntington’s and other diseases will be considered murder under these personhood bills.
One woman who read the book had a fatal kidney disease that required a kidney transplant. She wrote me to say that her twin granddaughters, thanks to IVF, don’t have her hereditary gene.
What impact do you hope the book will have?
I’m hoping my book will inspire young women to run for all available offices. And those of us older women who know how it used to be, we need to be speaking out. It’s critical that our voices are heard.
Look, they’re coming after the wrong group of women when they try to curb reproductive technology like IVF, because women trying to have a family, to have a baby, are unstoppable and are never going to allow those measures to be rolled back. At this moment we can’t stop it but we can head it off at the next election. But we can’t wait that long. I’m hoping that the medical community will stand up together to express their concerns and explain the danger of some of these measures.
What has been your experience of putting the book out there?
I’m a great keeper of things, so in addition to remembering most of my experiences so clearly, I had file folders full of documents — receipts, personal notes, the contract I signed with the second IVF program in the U.S. at the University of Texas Health Sciences in Houston, hand-written letters from doctors I’d corresponded with. I believe in using primary sources, and now my book is a primary source on IVF and assisted reproductive technology (ART) from a patient’s point of view.
I also had to be in touch with each of the physicians I wrote about before the book was published, and it was such a gift to have them read what I’d written about them. I was so lucky to get to know some of the most amazing surgical and medical minds in the world.