DES Exposure The Story of the Diethylstilbesterol Daughters

• Diethylstilbesterol, or DES is a synthetic estrogen previously prescribed to mitigate serious pregnancy complications.
• Children exposed to DES while in utero are now known as DES daughters, granddaughters, and sons.
• One nurse shares her story of being exposed to DES and how it relates to birth defects present in her and her younger sister.

Let’s be clear: Not too many people have heard of diethylstilbesterol (also known as DES). It was once thought to be the drug of choice in situations where a pregnant patient may be heading for a miscarriage, tubal pregnancy, or premature delivery in the US.

Diethylstilbesterol, which was manufactured in 1938, is a synthetic form of the female hormone, estrogen. It was prescribed to pregnant patients between the years 1940 and 1971 as it was believed to prevent pregnancy difficulties like the ones mentioned above. It was first used in the treatment of estrogen deficiencies, such as vaginitis, and menopausal symptoms as well as for the suppression of postpartum lactation.

DES Exposure Risks

The general risk of cancer in DES mothers was considered low; however, several reproductive and structural problems have been described and documented in what are now known as DES daughters, granddaughters, and sons. DES can induce alterations in the reproductive tract of the fetus that can lead to problems such as birth defects and other diseases later on.

My Story with Diethylstilbesterol

Both my younger sister and I are considered DES daughters.

I was born in 1954 and my sister in 1957. Both times, my mother was headed for a miscarriage and was prescribed DES by her obstetrician. I still believe, even today, that my birth defect, which is called a “double or bilateral choanal atresia, was absolutely attributed to the DES my mother was given.

A choanal atresia is defined as a congenital developmental narrowing opening of the nasal cavity that causes the child to have difficulty breathing. It is a rare condition that occurs in an estimated, 7 in 1000 live births and is seen more often in females than males.

A bilateral choanal atresia is a life-threatening condition that appears immediately after the birth of the child, whereas the child cannot breathe through the nose at all. Mouth breathing is the only passage for respirations, which causes a life-and-death situation.

It is believed that the tissue that should separate the nose and mouth area during fetal development remains present after birth. It causes an inability to pass a small suction catheter into the nasopharynx as well as feeding difficulties.

I underwent surgery at age 13 for repair of the bilateral choanal atresia at NYU Hospital with 2 ENT surgeons present. Up until that point, I never possessed a sense of smell, never smelled a flower, certain foods, or even fresh air.

I am told I am written up in the Journal of American Medicine Association, detailing the history of my diagnosis. I was also diagnosed in 2011, with a benign meningioma on the left side of my brain, which was discovered quite by accident, and caused a seizure while I was on vacation.

Both my sister and I had a gynecological exam while in our late twenties called a colposcopy. A colposcopy is a relatively painless diagnostic procedure similar to a pap smear, which is used to visually examine both the vaginal wall and the cervix using a tool called a colposcope.

The main objective of a colposcopy is to prevent cervical cancer by detecting and treating precancerous lesions and abnormal tissue growth early that may be caused by the DES administration while in utero. If any abnormalities are noted, tissue samples or biopsies are then taken and tested for cancerous or pre-cancerous cells.

Colposcopies are performed if the DES daughter has had abnormal pap smear results, abnormal results during a pelvic exam, or positive HPV test.

Results can range from normal, mild, or severe. I was lucky that I had normal results. My sister’s results were classified as severe, she had a positive pap smear as well as endometrial polyps, fibroids, ovarian cysts, and possible increased breast abnormality issues. She now continues to have gynecological exams twice a year.

As for me, my first pregnancy ended in a miscarriage. I do believe these incidents were also caused by the administration of DES in utero.

The Bottom Line

It was not until 1971 that the FDA discovered that DES could clearly be held responsible for serious health concerns, which include a rare vaginal cancer in girls and women.

It was then that DES was taken off the market. It is believed that five to ten million were exposed to DES in the womb from 1938 to 1971.

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