Medical Care for the DES Daughter

 by Sylvia Sensiper

When Jane McCray decided to get pregnant, she sought the help of a doctor who specialized in problem pregnancies. Since she had been exposed in utero to the drug diethylstilbestrol (DES), Jane knew that she faced a number of risks and therefore needed to be carefully monitored.

Jane's first pregnancy ended with a miscarriage, and her second ended as an ectopic pregnancy. When Jane became pregnant again, the next nine months included weekly ultrasound monitoring, special progesterone supplements, and months of bed rest. She had surgery in the fourth month to ensure that her DES-damaged cervix was able to hold the growing baby, and a planned cesarean section. Fortunately, she carried the child to term and gave birth to a healthy baby boy.

Jane was lucky to have found a practitioner experienced in caring for her special needs. Many ob/gyns are not trained to care for a DES daughter during pregnancy, nor are they aware of the additional attention that should be taken with annual medical exams.

A brief history: the problem with DES

Diethylstilbestrol, the first synthetic estrogen, was first manufactured in 1938. The drug was routinely prescribed to prevent miscarriages in the early stages of pregnancy. It was heralded as a medical miracle, vigorously marketed, and promoted by many pharmaceutical companies.

All this positive press came to an end in 1971 because of research published in the New England Journal of Medicine. The journal reported that a very rare form of cancer called clear cell adenocarcinoma of the vagina and cervix, which until then was mainly found in women over age 50, had been discovered in four young women. All of these women had been exposed to DES prenatally.

Additional research studies confirmed the evidence from the New England Journal of Medicine report, and the FDA banned the drug. However, an estimated five million pregnant women had already been exposed to the harmful effects of DES, and unknowingly bestowed on their children a number of medical abnormalities.

The physical effects of DES

Further medical research has found that approximately 1 in 1,000 DES daughters will develop clear cell adenocarcinoma of the vagina or cervix. If caught in its early stages, this rare form of cancer can be treated and is often curable. A more common aftereffect of DES exposure—benign precancerous cells around the vagina known as adenosis—has been found in up to 80% of women exposed to the drug. This condition rarely progresses to cancer, but should be monitored.

Reproductive tract anomalies, such as a misshapen uterus or anatomical changes in the fallopian tubes, cervix, or vagina appear in 20%-50% of the DES population. These changes, in turn, result in seriously increased risks for ectopic pregnancies (8.6 to 13.5 times more than normal), premature births (4.7 to 9.6 times more than normal), and possible infertility.

Ectopic pregnancies occur when the fertilized egg improperly implants in the fallopian tube instead of making its way to the uterus—a result of damage to the tubes. Premature births (births before 37 weeks) occur as a result of damage to the cervix that makes it unable to hold the weight of the growing fetus.

Receiving the appropriate medical attention