Moving DES From One Family’s Tragedy Into the National Spotlight

Moving DES From One Family’s Tragedy Into the National Spotlight

Judith Helfand, a documentary filmmaker, used her own experience as a DES daughter as the basis of a documentary to shed more light on the dangerous synthetic estrogen known as diethylstilbestrol.

“A mother took a drug to have a baby. And now that baby can’t have a baby because she has cancer. And the drug was DES. I’ll be back in 5 with the story.”

That is the vividly remembered “teaser” that Judith Helfand recalled from talk show host Phil Donahue’s TV story on DES. This is how she found out that she is a DES daughter: She was 14 years old in 1978 and home alone. Judith saw Phil Donahue’s story and was struck by the irony of pregnant women being given a drug to have a healthy child only to find out years later that the drug caused infertilities and cancers among the 5 million babies born after exposure to it.

She was outraged, and couldn’t wait to tell her mother about it. “Have you ever heard of this, Mom? Can you believe it?” That was when her mother told Judith that she was one of those mothers and that Judith was a DES daughter.

DES can cause abnormal reproductive organs in those who were exposed in utero. It can also cause a very specific and rare type of vaginal and cervical cancer called CCA. Judith was diagnosed with CCA in her mid-20s.

What do you do when you have cancer at age 25 and are facing a hysterectomy? Judith picked up her video camera and made an award-winning, genre-defining documentary. “A Healthy Baby Girl” is the name of the documentary, but was also the ad slogan for DES when marketed to doctors from the late 1940s until 1971. Even when running that advertising, research showed that DES causes infertility and deformed reproductive organs and can cause CCA.

Judith and I recently sat down to talk about how the film moved DES from a single family’s tragedy into a national spotlight showing the damages done to 5 million mothers and 5 million DES daughters and sons. The film demonstrates the universality of family love in the face of a medical mistake that could have cost Judith’s life and her relationship with her mother.

“I was terrified that we wouldn’t be able to talk about it [DES],” Judith told me. So after her hysterectomy, she came home to be nursed by her mother and she brought the video camera with her. Judith told her mother, “This is so not about the two of us. It’s so much bigger than us. This is about a horrible industry that put their greed and their needs and their stocks and their bonds way ahead of my relationship with my mother.”

Please watch my conversation with Judith. She’s a fascinating woman. And then watch her documentary. It’s available on iTunes and she could use the money — she’s now the adoptive mother of a healthy baby girl.

Suzanne B. Robotti

Suzanne Robotti founded MedShadow Foundation in 2012. Learn more about Su and her mission.

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