A DES Daughter? Part 8 in the Series "My Right Eye: A Blogger's Journey Through Cancer"
A DES Daughter?
We brought our baby boy home in October 1981. He was four-months-old, with a full head of dark blond hair and a Gerber baby smile. We called him Matthew, because the name means “gift of the Lord" and that's exactly what he was—and has continued to be—for nearly 31 years. He is the joy of my life.
Sometime in the mid-to late 1990s, my mother called to say she wanted to discuss something important with me, and could I please stop by her house on my way home from work. She had heard about a possible class-action lawsuit for children of women who had taken the FDA-approved drug Diethylstilbestrol, or DES, which had been widely prescribed from roughly 1940 until the early 1970s to pregnant women to prevent miscarriage. DES was eventually pulled from the market because it was found to cause a wide range of serious medical issues, including cancer. In fact, DES is the only transplacental carcinogen known in humans.
To my knowledge, my mother never had a miscarriage—either before her pregnancy with me or after. I had even asked my aunt about this when she was alive. But I was aware that my mother had trouble not only in conceiving, but also in carrying her only pregnancy to term.
My parents waited some nine years to have me. I was known as a "change-of-life" baby—my mother was in her early 40s when I was born. Her pregnancy was further complicated by the fact that she contracted toxemia, or preeclampsia, while she was carrying me. In the truest sense of the word, my time in utero was a period of "confinement" for her—with orders to take to her bed until I arrived. Finally, to make matters worse, her doctor discovered that I was a breach baby. As such, I was born by Caesarean section in May 1956.
At some point before the onset of my mother's toxemia diagnosis, she began to hemorrhage. Her account was, for her, unusually graphic. She and her friends often spoke in euphemisms; if they found out that someone they knew had cancer, for example, they would never say the word "cancer." It was always, "She has C-A." Here is the story I remember her telling me:
"I started bleeding, and it looked like a slab of liver on the floor at my feet," she told me. "Your father was frantic. He called Dr. O, who said, 'I can save the baby,' and phoned in a prescription at H Pharmacy. Your father ran to get it, and I took the medicine. The bleeding stopped."
What had once been a merely fascinating and somewhat dramatic account about my tumultuous road into the world had now become a crucial piece of information. My mother thought that the drug she'd been prescribed was DES, and the news was filled with stories of what were becoming known as "DES Daughters," offspring of women who had taken the drug during pregnancy and were now experiencing serious reproductive health issues.
My mother blamed herself for the tumor and cyst that devoured both of my ovaries. She felt tremendous guilt. By bringing me this information, she hoped that her guilt could be assuaged. What's more, she wanted me to pursue the cumbersome option of becoming part of the proposed class action lawsuit. She had acquired the name and address of a law firm working on the case, and she wanted me to contact them to get the process started.
I never blamed my mother for what happened to me. Any blame to go around—and there was plenty—should have been distributed among the long parade of doctors who misdiagnosed me at every turn. But I could not convince my mother that I held her harmless. And even if I could, she needed, in some Catholic way, to feel this guilt. She had been taught that tragic consequences are always tethered to a fault somewhere along the line. She was adamant that I follow these leads.
I had learned long before this that arguing with my mother about anything was an exercise in futility. I took the information, drove home, and told my husband about the situation.
"I don't think there's any harm in looking into it," he said. "You ought to be compensated for all those years of pain and trouble." And then he told me something that surprised me.
“You know, you could have sued Dr. W for malpractice.”
“What?! Why didn’t you ever tell me this before? Why didn’t we?”
“Maybe we should have. But I just didn’t think you wanted to live through all of that again.”
I considered this for a moment. He was right. I didn’t want to. And even then, 20 years after the fact, I still did not want to.
The next day, with a heavy heart, I drafted a letter to the law firm, briefly outlining my story. I asked if they would consider adding me to their list of plaintiffs.
To be continued …
Part 1: The Baby's Nightmare
Part 2: The Nightmare Returns
Part 3: Room 101 and the Masquerading Marauder
Part 4: The Eye as Metaphor
Part 5: The Back Story
Part 6: It's Nature's Way
Part 7: Help From the Man on the Street
The Midlife Second Wife