Stilbestrol and Me

My parents were married in June of 1942.  The following year a male child was born and died shortly afterward; he was a “blue baby” with a congenital heart defect.  Ironically, it was only two years later at Johns Hopkins that surgeon Alfred Blalock and his laboratory assistant Vivien Thomas performed the first surgery to correct one type of “blue baby syndrome,” a story told in the film, “Something the Lord Made.” http://www.imdb.com/title/tt0386792/

Shortly after that, my father went to Europe, where he served as a chaplain for the remainder of the Second World War.  He returned to the US in 1945 and my mother became pregnant in September.  Having lost her first child, she was especially concerned for my safety so when a highly esteemed ob/gyn suggested she take a new medication that was supposed to prevent miscarriage, she did it.  She gave birth to a healthy daughter on June 11, 1946.

In the early 1970’s I started reading about diethylstilbestrol  (DES), a synthetic estrogen that was given to pregnant women from the 1940’s on, but was now found to increase the incidence of a rare cancer in women prenatally exposed to the drug.  I asked my mother if she had taken DES and she told me she had taken “lots of it.”  Two points were especially galling about the situation.  It was an example of misdiagnosis:  DES was supposed to treat miscarriage but the problem was not with my mother; my would-have-been brother had a heart defect.  It also showed blind over-confidence in a drug that had not been sufficiently tested; my mother and others like her were unwitting guinea pigs and so were their daughters.  DES was later shown to be of no use in preventing miscarriage but to have a number of adverse effects on DES daughters and sons and possibly on the third generation as well.

The next step was to find out whether I had cancer.  The recommended test was something called a colposcopy and at that time only one doctor in the Boston area performed them.  My mother and I paid him a visit.  Before examining me, Dr. R assured us that I couldn’t possibly be a DES daughter because I was too old; my mother must be mistaken.  The test proved otherwise, however, and I was told that I had a “pre-cancerous condition” caused by DES. 

For a while I worried about this.  The number of women who got a DES-related cancer was small but what if I turned out to be one of them? I also tried to participate in a lawsuit against Abbott Laboratories, one of the manufacturers of the drug.  My claim was disallowed – I no longer remember why.  The next several years brought a series of problems related to my reproductive system, culminating in a hysterectomy in 1978 at the age of 32.  Did DES cause my infertility? We’ll never know.  It may have resulted from my hypothyroidism or my very stressful professional and personal life.  My smoking habit probably didn’t help either.  The good news is that I never got cancer and, almost forty years later, I’m very healthy.   I do get regular physicals just to be on the safe side.

Dr. Gustafson, I am grateful to you for bringing me into this world but, when it came to stilbestrol, I wish you had left well enough alone.