Alice Eve Cohen On 'What I Thought I Knew'
GUY RAZ, host:
Welcome back to ALL THINGS CONSIDERED from NPR News. I'm Guy Raz.
When Alice Eve Cohen was 44, she rushed to the hospital for an emergency CAT scan. Her belly was swollen, and doctors thought it might be an abdominal tumor, a big one. The radiologist frowned at the images.
Ms. ALICE EVE COHEN (Author, "What I Thought I Knew"): (Reading) We did find something in you, Mrs. Cohen. You did? We found a baby. What? We found a baby. What? We found a baby in you. Congratulations, Mrs. Cohen.
RAZ: That's the playwright and actress Alice Eve Cohen, reading from her memoir, "What I Thought I knew." Until that moment, what she thought she knew was that she could never, ever get pregnant.
Alice Eve Cohen joins us from our New York bureau. Welcome to the program.
Ms. COHEN: Thanks, I'm delighted to be here.
RAZ: You were told you could never conceive a child. Why?
Ms. COHEN: Well, when I was 30 years old, I actually wanted to become pregnant, but my period had stopped, and I knew that I had been affected by being a DES daughter. My mother had taken diethylstilbestrol when she was pregnant with me.
RAZ: Which is a synthetic estrogen.
Ms. COHEN: Exactly. And as a result, I had a deformed uterus. And I - we went to a fertility specialist who said, well, first of all, you're never going to get pregnant on your own because your estrogen is so low. In fact, I'm going to put you on estrogen replacement therapy at this young age of 30. And secondly, you should never, ever attempt through fertility treatments to become pregnant because the outcome would be terrible. There's no way with your small, deformed uterus that you could possibly carry a baby to term. So it would be dangerous for you and the baby. So I recommend adoption. And I did, in fact, go that route - and adopted a daughter.
RAZ: So, Alice Eve Cohen, you suddenly find out you're six months' pregnant. You're 44 years old. On top of that, you had been taking hormones for your condition through the six months of the pregnancy so far, and the doctors were concerned that there might be some complications.
You're in the hospital, and you're looking at the sonogram, and what do you see?
Ms. COHEN: The doctor explained that based on what he saw on the sonogram, the baby was male. But we got a call a couple of days later from the doctor, who said, well, it appears that the baby is genetically female and anatomically male, which meant that he anticipated the baby would have ambiguous genitalia.
That, in turn, indicated that the baby might have something called chronic adrenal hyperplasia, which is a potentially fatal enzyme disorder. So I imagined a terrible outcome, a terrible scenario, and it was unimaginably painful and frightening.
RAZ: And you even considered abortion at a certain point.
Ms. COHEN: I did. The only option that was open to me at the time was a late-term abortion in Wichita, Kansas, with the late George Tiller.
RAZ: The doctor who was murdered.
Ms. COHEN: Yes. And in that terrifying time when I was feeling hopeless about my future and the baby's future and really could see no way out - in fact was feeling suicidal when I was trying to assimilate all of this information - being given that choice saved my life. And it enabled me to choose to have the baby.
RAZ: And I mean, you were worried. I mean, one of the side effects of the DES that your mother had taken when she was pregnant with you was that there was a pretty significant possibility that you would give birth early, very early.
Ms. COHEN: Yes, in fact, you know, way back at the age of 30, when the fertility doctor examined me, he said: You wouldn't be able to carry a baby past six months.
Well, I found out I was six months' pregnant, you know, liable to give birth any moment and therefore, was exceptionally careful not to - well, really not to move.
You know, I tried to stay as still as possible for the remaining three months to protect the pregnancy. And in fact, I did have a full-term birth.
RAZ: Alice Eve Cohen, you had minimal amount of health insurance when you were going through this process. What did you learn about the health-care industry in our country during that time?
Ms. COHEN: I found it well, in retrospect, I find it almost comical how many errors, how many omissions there were, how inadequate my health insurance was. At the time, it wasn't remotely comical.
My insurance company refused to cover any high-risk obstetric care because none of my odd series of problems fit into their customary categories. So I paid for every bit of obstetric care out of pocket, going into tremendous debt. And I think that the way I was shafted by my insurance company is probably very typical of how many Americans feel.
RAZ: Shortly after you turned 45, you actually gave birth. And I mean, all of these fears had been building up at that point: the gender ambiguity, the dying in childbirth, the child not surviving. What happened?
Ms. COHEN: Well, you know, the title of the book is "What I Thought I Knew," and at that moment in the book, I thought I knew that the baby would be born with genital ambiguity. And in fact, it seems that it was either a misreading of the sonogram, or it might have been a temporary genital enlargement because of the hormones that I was taking.
I didn't anticipate what really was happening, which was that my daughter was born with a growth disorder, and one leg was shorter than the other - which was, at that time, an undiagnosable mystery.
RAZ: And how is your daughter today?
Ms. COHEN: My daughter is fantastic. She just had her 10th birthday. She's super smart. She's got a fantastic sense of humor. And she is a wonderful fiction writer.
RAZ: And her condition has been - improved?
Ms. COHEN: She had a leg-lengthening surgery last year, which was just the most difficult, painful, long procedure. And I don't wish it on anyone, but it did lengthen her leg. And we've been giving a series of sighs of relief as she outgrows some of the earlier challenges.
RAZ: Has she read the book? I mean - and if she has, what does she make of your talk of abortion or even the fact that, eventually, you brought a wrongful life suit against the doctor who initially misdiagnosed you?
Ms. COHEN: I'm delighted you asked that question. It was something that my husband and I were very worried about before the book was published. You know, we don't generally believe in censorship, but we were ready to hide the book, send her away to sleep-away camp when the book came out and, you know, pretend nothing had happened.
But she's too smart for that. So the one condition we gave her was: You have to read it when mommy or daddy is in the room because we know you're going to have a lot of questions.
So she read the book, and she said: Good book, Mom. I really liked it. And I said, I'm so glad, but I have to say, Daddy and I were really worried that you'd be upset by the book. Did it upset you at all? And she said nope, because I knew exactly how everything was going to turn out.
RAZ: That's Alice Eve Cohen. She's a playwright and theater artist. The story of her unexpected pregnancy is called "What I Thought I Knew."
Alice Eve Cohen, thank you so much.
Ms. COHEN: Thank you.
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