DES Mothers

Navigating the Complex Terrain of Prenatal Exposure – Breast Cancer Risks, Difficult Conversations, and the Emotional Toll

Women Exposed to DES While Pregnant

Between 5 and 10 million women were prescribed DES during pregnancy. Risks and outcomes from DES exposure differed for the mother who carried the fetus (DES Mother ), the child born after exposure (DES Daughter or DES Son), and even the grandchildren of the DES Mother (DES Grandchildren, DES Granddaughters, DES Grandsons). 

Between 1938 and 1971 (especially in the 1950s and early 1960s), the medication diethylstilbestrol, or DES, was commonly prescribed to pregnant women to prevent miscarriage. It was frequently given to those with a medical history of miscarriage, diabetes, bleeding during pregnancy, threatened miscarriage, or premature labor.

DES was primarily prescribed in pill form but was also given by injection until the mid to late 1950s. It could also be administered via vaginal suppositories (sometimes called pessaries)

Complicating things, DES was also included in the formulations of some prenatal vitamins, meaning individuals were exposed without actually having had DES specifically prescribed for them. When the terrible news broke in 1971 that DES could cause cancers and organ damage in prenatally exposed fetuses, and when later it was discovered DES Mothers were at a higher risk of breast cancer (see more below), many people reached out to their obstetricians for medical records. Women and their families needed and wanted to know if they were exposed to DES, for how long, and at what dose level, and to determine what care they should be seeking now.

Some doctors reached out to their patients and families and offered them their records of exposure – according to American Medical Association (AMA) recommendations at the time. But there were years, even decades, between the obstetric care provided and the discovery of the numerous risks introduced by DES. Many families have had to depend on other doctors and pharmacists who had, by then, destroyed or lost the records. Families are left to rely on the DES Mother’s recollection of her prenatal care. 

Unfortunately, confirming exposure to DES can be impossible in many cases. The time between exposure and knowledge of the dangers of DES was often separated by years, even decades. Mothers who recall being prescribed DES, daughters and sons exposed in utero, and family members requesting medical care records from a pregnancy years ago might discover that the records were lost or destroyed. Check out suggestions for where and how to find your records at DES Action’s Medical Records Search. 

This lack of medical information leaves DES-exposed women (and men) and their families reliant on individual family histories when attempting to determine the source of reproductive and other health issues in their children and grandchildren.

Health Effects for DES Mothers 

Breast Cancer

The risk of developing breast cancer is between 30% and 40% higher in DES Mothers than in unexposed women. Multiple studies have confirmed the increase with some variation in the projected percentage of women. This added risk should be taken into account when making medical decisions, such as starting or continuing hormone replacement therapy. If hormone replacement therapy is necessary, then only short-term use with the lowest dosage should be considered. This recommendation applies to all women, but especially those exposed to DES. Additional recommendations for DES Mothers include annual breast screenings, including clinical breast exams done by their healthcare professional.

Fortunately, DES Mothers have not been found to have an increased risk of other cancers. 

Tell Your Children

 Women who were given DES are urged to tell their children. This difficult conversation should be held even if these children (now adults) have no health problems. DES exposure is an important part of their health history. Having the knowledge of potential exposure allows the next generations to make informed decisions and obtain the recommended health screenings. 

Research on how this exposure impacts DES Daughters, DES Sons, and now DES Grandchildren is ongoing and may reveal previously unknown health effects. 

Emotional Impacts

DES Action has decades of working with, counseling and representing those exposed to DES. Based on our experience, DES exposure creates emotional trauma for all parties involved: DES Mothers,  DES Daughters, DES Sons, and DES Grandchildren. Family members who were not exposed are not excluded from the emotions stirred when learning of the exposure and potential harm to their loved ones. 

For DES Mothers, there is often a feeling of guilt even though they were following their doctor’s orders in hopes of having healthy children. They took their medication in good faith without any knowledge of future adverse effects. 

DES Mothers and their children were subject to medical harm and should be supported by the healthcare community. Many DES Mothers understand this intellectually but often find it hard to reconcile emotionally. It can be tough shaking feelings of guilt, even though they certainly were blameless. 

Also, DES Mothers may find themselves anxious that their children might develop medical problems. Every new health issue linked to exposure can give rise to unfair self-blame and concern. Experience shows that keeping lines of communication open is helpful. Staying current on the latest DES findings and health screening recommendations can facilitate discussions with family members.

Feelings of helplessness and pain can be reduced by taking action. That includes being vigilant in obtaining information and urging affected family members to seek appropriate medical care. Working together and sharing information brings individuals closer because they feel supported in dealing with the impact of DES on their lives.

References

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