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The Mothers and Daughters of DES

AJC Home Edition - November 16, 2003

By Patricia Guthrie

 

Between 1938 and 1971, millions of women were exposed to a harmful estrogen commonly prescribed for miscarriages. The drug is gone, but not its legacy.

 

 

She took the drug because her doctor told her to.

 

Because she didn't want to bury another tiny infant.

 

Because her body needed help bringing life into the world.

 

"I didn't have any control over the fact it was given to me," recalls Shirley Whitehead of the estrogen drug DES.

"It was 1957, and I was 22 at the time," she continues in her distinctly born-and-bred-Southern lilt. "My first baby lived three-and-one-half days. She was born two months premature. So they started giving me those hormone injections, and I got pregnant immediately with Julie."

 

Recounting the difficult beginnings of motherhood, Whitehead sits in her Marietta home surrounded by signs that all came out well in the end. Black-and-white photos of her children compete for attention with larger, glossier shots of six grandchildren. In wedding shots, holidays and other gatherings, the family grows year by year.

 

Sitting across from her, Julie, 45, and Ellen, the youngest at age 41, listen to their mother's familiar story. They sip from familiar coffee cups in the kitchen that was once a train station of activity for her four children, born within a four-year span.

 

The story begins when daughter Julie appears, a pink, perfect, 6-pound-4-ounce bundle of answered prayers.

Thirty-seven years later, the price paid for Whitehead's first healthy child came crashing down.

Cancer.

 

Julie was given six months to live.

 

Like millions of well-intentioned women who had problems with sustaining pregnancies, Shirley Whitehead took a wonder drug her doctor recommended called diethylstilbestrol (di-ETH-il-stil-BES-trol) or DES. It was approved for that use by the federal government from 1938 to 1971.

 

Regarded at the time as harmless and effective for both women and their developing babies, it's since been linked to increased cancer risks in both the women who took the drug and their DES- exposed daughters.

 

The red flag went up in 1971, when a University of Chicago researcher linked in utero DES exposure to an unusual vaginal and cervical cancer showing up in young women and girls. The rare cancer, called clear cell adenocarcinoma, or CCA, is usually seen in postmenopausal women in their 60s and 70s.

 

The U.S. Food and Drug Administration immediately issued a bulletin advising doctors to stop giving the drug to pregnant women.

 

But much damage had already been done. The federal government estimates that about 5 million U.S. women took the drug, in turn exposing some 5 million children.

 

Decades of study on DES have revealed that as many as 1 In 1,000 DES daughters may develop CCA, the vaginal/cervical cancer, and that their ability to become pregnant and sustain pregnancies may be impaired. Also, mothers who took the drug have a 30 percent higher risk of breast cancer.

 

But many DES-exposed individuals --- now ranging in age from 32 to 65 --- are unaware that they should be concerned about their days in the womb. In addition, few clues exist to help anyone figure out whether they are part of the DES generation.

In hopes of alerting or reminding mothers and their offspring born between 1938 and 1971 of possible health risks, the Centers for Disease Control and Prevention is in the throes of a $1 million national public awareness and information campaign.

 

 

"The prescription patterns around the country are not easy to track," says Marsha Vanderford, acting associate communications director with the CDC. "The women prescribed DES during pregnancy are aging, and some are no longer living. So the ability to find out whether or not they were exposed is rapidly declining."

A complicated issue.

 

No medical test exists to detect DES exposure.

 

In addition, the drug was not patented under one name by one pharmaceutical company. Instead, at its peak in the late 1950s and early ‘60s, more than 200 drug companies manufactured it as an injection, suppository or pill and sold it under many names.

 

Hundreds of women have successfully sued both large and small pharmaceutical companies that made and sold the drug, on the grounds that the product was not properly tested before distribution.

 

Sybil Shainwald, a New York City attorney and one of the leading lawyers handling DES cases in the country, has represented more than 300 women and sued 18 drug companies.

 

"To me, DES is the worst example of the wrong that can be done by corporate America to women," Shainwald said. "Many lives have been ruined."

 

Most cases are settled out of court, or juries have found in favor of the plaintiffs, Shainwald said.  One verdict amounted to $42 million for 11 women.

 

Over the decades, DES manufacturers maintained that the drug was considered safe and effective at the time it was prescribed to pregnant women.

 

"We sympathize with those who have been affected," said Joan Todd, a spokeswoman with Eli Lilly and Co., one of the major pharmaceutical companies to make and market DES. "At the same time, [we] are confident that we acted in accordance with accepted scientific and medical knowledge."

 

Just how many women, mothers and daughters, exposed to the drug have developed breast or clear cell adenocarcinoma is unknown. The University of Chicago, the institution that discovered the link between cancer and DES, continues to investigate the drug's lingering effects.

In its self-reported registry, about 750 women are confirmed with clear cell adenocarcinoma cases; two-thirds were exposed to DES or a similar compound, university researchers said.

 

Despite continuing lawsuits and occasional blips of DES news, the drug is seldom discussed by doctors, public health officials say.

 

“It has fallen so far off the radar screen," says Candy Tedeschi, a Long Island, N.Y., nurse who has worked with the CDC providing lectures on DES at health care conferences and hospitals.  She has also helped treat and follow DES-exposed women for more than 20 years at a private health clinic.

 

Catching clear cell adenocarcinoma early, when it's more treatable, is vital, Tedeschi said. Cure rates for the cancer are around 90 percent, although success comes at the price of having a hysterectomy.

 

Several ironies unfold along the DES timeline: The drug was given to sustain pregnancies, but studies ultimately found it caused more miscarriages. And DES-exposed daughters trying to become mothers may not know the drug could be responsible for their infertility, difficult pregnancies or premature labor.

 

"My mom took DES after two miscarriages," says Denise White, 51, of Suwanee, who experienced two traumatic second-trimester miscarriages of her own. A doctor then discovered and corrected a physical problem in her reproductive tract that's common in DES daughters.

 

White went on to deliver two healthy, full-term boys. But she continues to be haunted by DES. Over the years, she's undergone numerous medical procedures, including a partial hysterectomy for uncontrolled bleeding and uterine tumors.

"I've endured a great deal of pain, emotionally and physically," White says. "Now I worry about my sons, who are third-generation exposed."

 

Dire Legacies

Julie Whitehead has survived one of the more dire legacies of DES --- clear cell adenocarcinoma. Initial treatment required a complete hysterectomy, then weeks of radiation to zap tumors and surrounding tissue.

 

She has also endured what's considered a record number of chemotherapy treatments at Emory University Hospital --- 109 cycles over seven years. She received Taxol, a cancer-fighting drug that the National Cancer Institute was testing in a clinical trial on DES daughters fighting advanced CCA.

 

On her 100th round of the intravenous drug last year, Emory threw its longtime patient a party.

 

"Every three weeks, I spent Thursday and Friday on the 11th floor, the gynecology floor. The nurses would tell me, 'Julie, we have 1110, your favorite room, available,'” she laughed. "I would take my laptop or my cross-stitch. And I learned 21 laps on that floor equals one mile."

 

When the treatment stopped last November, Julie was finally free to make more long-term plans --- like a cruise ship adventure with a friend.

 

Julie's diagnosis came at age 37. She was working in Denver at the time with a computer company that was a contractor for Eastern Airlines. Normally a person who rarely got sick, Julie had come down with many colds, then anemia prior to the diagnosis.

 

Her mother and father, Shirley and Russ Whitehead, had braced themselves for such bad news for three decades, ever since the first warnings of DES's toxic effects were revealed. Shirley had stressed to her daughter that she needed to be vigilant about the cervical cancer risk and get a Pap test every year.

 

“I took It seriously, but once I was in my 30s, it wasn't foremost in my thoughts,” Julie admits. “My mom would ask, ‘Now, Julie, have you gone for your physical?’ and I’d reply, ‘Yeah, yeah, yeah, sure, Mom.’” Unlike younger women diagnosed in the early stages of CCA, Julie's prognosis was grim.

 

Doctors found a large tumor in her cervix. Cancer had spread into surrounding lymph nodes. The disease had started its relentless advance.

 

“She should be dead,” Dr. Ira Horowitz, Emory's Winship Cancer Institute director of gynecological oncology, plainly states of his patient. "She had lymph nodes the size of golf balls going up toward her heart. She did not do well on the treatment first given her."

 

Take her home, the doctor told the family. Take her home; she's got about six months to live.

 

Go out and enjoy your life, the doctor told the patient. Go out and enjoy what time you have left.

 

"It was the worst feeling in the world," says Shirley Whitehead. "When something happens to one of your children, it happens to all of them. They all think, 'Mommy can fix it.'

 

“‘No, I’m sorry, honey, I can’t fix this.’ ”

 

Julie distinctly remembers the request she made of her parents and three siblings. "I told them, 'I don't want you talking behind my back. I don't want you grieving behind my back. I don't want you crying behind my back.' So we all just sat there at the hospital and cried and cried."

 

But Julie Whitehead is still here --- for reasons no one can really explain.

 

She received Taxol chemotherapy and stayed in the clinical trial longer than any other DES patient in the country. And along the way, she delivered some potent lessons about beating the odds.

 

"She's taught us humility. She's brought home that doctors are not God," admits Horowitz, who continues to monitor her. "We can tell patients statistics, but every one of them Is an individual, and you should do everything possible for them because you just don't know how they'll respond.”

 

“She has just been an inspiration."

 

These days, Julie says, she's feeling healthier and more energetic since finally stopping her every- three-weeks chemotherapy regimen one year ago.

 

Just recently, she expanded her volunteer to-do list to include helping patients and families at Emory's renovated Winship center. She also teaches Bible school and volunteers for the Cobb County library system and Zoo Atlanta.

 

Unable to work because of the draining disease and its cure, Julie depends on Medicare, the federal health insurance plan, and disability payments. Daily, she continues to take many medications and precautions because of her fragile immune system and the toll the treatment took on her bladder, heart and blood.

 

Bacterial infections also land Julie time and again in the hospital, but she says she tries not to dwell on her circumstances.

“By May of this year, I started thinking: 'Why am I still here?  What is it I'm supposed to be doing?' Everyone else I knew with cancer was dead."

 

Shirley Whitehead says she's often asked if she's mad or upset at the medical profession for prescribing a drug that's led to so much personal and family pain.

 

"The doctors did what they thought was best at the time," she states in her determined, protective, motherly tone. "I never have any anger. I never have any guilt. It was a miracle I even had her. I never thought I'd have a baby to take home from the hospital."

 

"Julie was my miracle baby."

 

WONDER DRUG 'TIMELINE’

1938

The first synthetic estrogen, diethylstilbestrol, DES, developed in England. Considered safe and effective; doctors begin prescribing it for pregnant women who've experienced miscarriages or premature deliveries.

1953

During the first controlled, randomized clinical study, it proved ineffective and actually caused more miscarriages in women taking DES. Findings are basically ignored.

1971

Physicians advised by Food and Drug Administration to stop prescribing DES based on a new study linking it to rare vaginal cancer in girls and young women.

1979

A 25-year-old cancer survivor successfully sues a DES drug manufacturer over injuries; hundreds of similar lawsuits follow.

1992

Congress mandates a national program of DES research, outreach and education.

2003

Center for Disease Control and Prevention launches national DES awareness campaign.

 

Note: DES is sometimes confused with the drug thalidomide, which caused birth defects. Thalidomide was never approved for prescription in the United States. DES was manufactured by hundreds of drug companies under many names, including stilbestrol and DESPlex.

 

DES DAMAGE REPORT

An estimated 5 million pregnant American women took the drug between 1938 and 1971. Thirty years of research has shown:

 

INTERESTING FACTS

• DES mothers: Women prescribed DES during pregnancy have a 30 percent increased risk of breast cancer.

• DES daughters: 40 times more likely to develop clear cell adenocarcinoma, CCA, a rare vaginal and cervical cancer that requires radical hysterectomy. Also at higher risk for reproductive tract differences, such as a T-shaped uterus; tubal pregnancies, miscarriages and infertility. Rates of other cancers, other than CCA, are similar to women in the general population.

• DES sons: Association between DES exposure to sons in the womb and testicular cancer hasn't been proved. They do have an increased risk for noncancerous growths on testicles and genital malformations.

• Third-generation: To date, small studies haven't shown an increased risk of problems to offspring of DES-exposed women.

Sources: Centers for Disease Control and Prevention; DES Action USA

 

RESOURCES

 

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