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Children, Even Grandchildren Affected By DES Legacy

Sep 26, 2003 | The Washington Post

It is with numb precision that Chris Vanselous recounts a long succession of failed pregnancies. She miscarried six babies before the birth of her daughter, Jill, the only child to survive her mother's womb.

And for years Vanselous gave credit for that solitary healthy delivery to diethylstilbestrol, or DES, a drug that she and nearly 5 million other would-be mothers were prescribed from 1938 to 1971 under the belief that the synthetic hormone would help them build families where none seemed possible.

"My doctor told me he had the magic bullet," recalled Vanselous, 68, who was taking as many as 20 of the small red DES tablets a day when she was seven months pregnant. "He said I'd have a bigger, healthier, brighter child."

But DES did not lead to healthier babies, nor did it prevent miscarriages, according to research that began appearing in 1953. What it did lead to was a host of health problems for mother and child. Widespread use of DES on pregnant women was halted in 1971, after a study linked clear cell adenocarcinoma, a rare cancer of the cervix and vagina, to those exposed to the drug in the womb.

Other children, like Vanselous's daughter, Jill Murphy, suffered malformed reproductive organs, which would later lead to increased infertility, tubal pregnancies and miscarriage, effectively robbing many of the chance to bear their own children.

Exposure to the drug also harmed male children, who face an increased risk for epididymal cysts non-cancerous growths on the testicles and varicose veins on the testicles. Now, research is beginning to emerge about possible risks to a third generation the grandchildren of women who took DES. Experts worry that many in this group the oldest are young adults are unaware that they were exposed to the drug and may be at risk for health complications.

Because of that concern, coupled with the public's fading memory of DES and its dangers, the Centers for Disease Control and Prevention (CDC) spent three years developing a public education campaign. Rolled out in March, DES Update features a Web site ( to explain the impact of the drug and disseminate the newest research to consumers and health care providers. It includes a tool to help individuals assess their own possible exposure.

"In a sense this is a very important time in the DES story because our ability to ask women who took DES if they did is passing, and physicians who prescribed the drug have gone out of practice or their records are destroyed," said CDC spokeswoman Marsha Vanderford. "While the opportunity to find out if you were exposed is expiring the health effects are ongoing."

Vanselous recalls she was sitting in a hair salon in 1971, idly flipping through a women's magazine, when she happened on an article about DES and its newly established link to vaginal cancer.

She kept the news from her daughter for six years until Jill began to menstruate, a time when specialists recommended the young girl be examined for complications. Tests revealed Jill had a malformed cervix, a common result of DES exposure. Doctors warned that she would live with the threat of vaginal cancer until her twenties. There were, as far as researchers knew, no other problems associated with the drug.

But the other risks of DES became clear in 1998 as Murphy, then 34, and her husband, Luc, began to try to have children.

Murphy repeated her mother's history of failed pregnancies. Tests revealed she has a T-shaped uterus, a classic symptom of exposure to DES. After three failed pregnancies, the Alexandria, Va. couple conceded they would have no biological children.

"I knew about the cancer but never, ever, was I told that I could have fertility problems," said Murphy, one of thousands of women who have filed suits against DES drug makers and won settlements since 1979. "DES took my right to have children. It took the rights of thousands of women."

While damage claims have not been easy to prove, almost every case has been settled before trial, with payouts ranging from $50,000 to $4 million. Publicity from those lawsuits and years of grassroots organizing by women's health groups led Congress in 1992 to create a program of research, outreach and education about DES.

Every year scientific studies reveal new repercussions of the drug, which was taken by an estimated 4.8 million women, who then exposed an estimated 4.8 million children.

To date, most of the research has focused on the troubles suffered by daughters exposed in utero. According to findings published in 2001 in the American Journal of Epidemiology, these women have a higher infertility rate and are two times more likely to have a miscarriage or premature labor than unexposed women. A study released last year by National Cancer Institute researchers showed, at least preliminarily, that DES daughters over age 40 are 2.5 times more likely to experience breast cancer than unexposed women in the same age range.

With the exception of testicular cysts, no health effects have consistently been found in DES sons. But studies sponsored by the National Cancer Institute continue to monitor health problems, such as the risk of testicular cancer, among these men.

Third-generation children the offspring of DES daughters and sons are just beginning to reach the age when relevant health problems can be studied.

Research published last year by the Netherlands Cancer Institute suggests that hypospadias a misplaced opening of the penis occurred 20 times more frequently among third-generation sons.

Experts urge caution about the future. In laboratory studies of elderly third-generation DES-exposed mice born to DES daughter mice, an increased risk of uterine cancers, benign ovarian tumors and lymphomas were found. Third-generation male mice were shown to be at risk for certain reproductive tract tumors.

Researchers continue to look for evidence of reproductive abnormalities and cancers among third-generation DES women.

A report published in August in the Journal of Pediatric Hematology/Oncology suggested a possible link between a 15-year-old girl's rare case ofsmall-cell carinoma of the ovary and her maternal grandmother's use of DES.

It was English biochemist E. Charles Dodd who in 1938 synthesized the first orally administered synthetic estrogen. Two years later, the Food and Drug Administration (FDA) approved the drug, DES, as a treatment for menopausal symptoms.

DES started to become popular in 1947, after publication of an article by Harvard University professors George Smith and Olive Watkins Smith, who theorized that high doses of DES could prevent miscarriage.

The truth about DES didn't surface until 1953, when William Dieckmann, a doctor at the University of Chicago's Lying-In Hospital, conducted the first controlled, double-blind study on the use of DES during pregnancy. His conclusion: DES was ineffective against miscarriage.

"But (they) kept right on prescribing," said Cody, 80, who was put on DES two years after Dieckmann's study was published. She took the pills four times a day until her 37th week of pregnancy. In total she ingested more than 10 grams of DES as much estrogen as is found in 500,000 of today's low-dose birth control pills, she said.

It would be nearly 16 years before the research of Arthur Herbst, a physician at Massachusetts General Hospital, linked the drug to eight rare cases of vaginal cancer in DES daughters.

The FDA responded in 1971 by issuing a bulletin to physicians. It said DES should not be prescribed for pregnant women. Paving the way for other hormone replacement therapies, DES was later used for hundreds of treatments from prostate cancer and acne and menopause symptoms, to suppressing breast milk and stimulating livestock growth. Today it is mainly used in veterinary medicine to treat incontinence in dogs and cats.

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