My story is not special other than it is my story. My mother, a Navy wife, got pregnant with her first child on her honeymoon. Nine months later a healthy baby girl was born. Over the next six years she suffered miscarriage after miscarriage in an attempt to expand her family. Finally, late in 1954 she learned that she was once again pregnant. The doctors told her that there was a wonderful medication available to help support the pregnancy. She was given diethylstilbestrol (DES) and my story begins.
The Early Realities of DES
My childhood and youth were not very eventful. As an adolescent, I had very painful periods, though still not outside the norm. When I was 19 years old in 1974 my mother read an article in a woman’s magazine about DES, and the daughters who were now having health concerns do to DES exposure. Recognizing that she had taken DES during her pregnancy with me, she told me that I should be evaluated by a physician. Up until then I had never had a PAP test or any pelvic exam. I was young, modest, and naive. My innocence was gone in the sterile clinical exam room. Medical history taken, laying down on the hard table, feet in the stirrups I was poked, prodded, and then scraped for samples of cervical cells. Then the doctor asked for the colposcopy equipment to be brought in. Wheeled into the room, my insides were stained, and then magnified. Finally, when the abnormalities were found, the camera attached to the colposcopy machine documented the DES damage. I was now a DES Daughter.
These exams now became an every 6-month ritual as I was told “you will get cancer, it isn’t a matter of if, but when.” They wanted to catch the cancer (Clear Cell Carcinoma) the moment it turned. After a few years though with no changes they had started relaxing their prognosis. I was allowed to go in for these exams once a year. Still cautious, but more optimistic, I starting living my life as a young woman. I dated, fell in love and got married.
Starting a Family as a DES Daughter
When my husband and I decided to start our family, I had been given no warnings about the potential issues with pregnancy combined with my DES exposure. My fertility was good, I got pregnant right away. The pregnancy also went smoothly until the 22nd week of gestation. I was feeling nothing different, enjoying the growing baby I was carrying. Without warning my water broke. Quickly I called my Ob/Gyn who dismissed my experience. “Perhaps you just lost bladder control, not unusual.” I knew it was not an issue of bladder control, so I went in to his offices. It was the lunch hour, the offices were quiet and the staffing short. I was taken back to an exam room and waited. I waited a long time, and finally, the dismissive doctor came in to examine me. He tested my discharge and his affect changed at once. He called over to the hospital and had me admitted at once.
DES Exposure Claims its First Victim
I was observed for several days, with no changes. Finally contractions started, and at 22 weeks I delivered a nearly one pound baby boy. He died during the delivery. The DES exposure had taken its first victim.
DES Exposure Claims its Second Victim
A few months later, back in the sterile exam rooms for more testing, I was found to have a very incompetent cervix. I was told that I would be considered a high risk pregnancy from then on, though they felt there were options to help me carry a baby to term. With the blessing of the doctors I became pregnant again, and this time a cerclage was placed in my cervix to help support the pregnancy. When the doctor came in to see me just after the cerclage was placed, his face was long. “Your cervix is very weak. You are only 11 weeks pregnant, but already you are totally effaced and starting to dilate. You will need to be on total bed rest, and make the pregnancy last as long as you can.”
With that I was sent home and spent the next 12 weeks in bed. At 23 weeks I started spotting and having contractions. I was taken to the hospital where they tried to stop the labor, but could not. I delivered my second child, a son who was 1 lb 8oz. with paper thin skin. I could fit my wedding ring over his hand and up his arm. We were told to expect him to die within an hour of birth due to his prematurity, but he didn’t. He lived an hour, then two then four. Finally they decided to transfer him to a NICU unit in a larger city about 2 hours away by car. I was alone on the maternity floor, mothers nursing babies, walking the halls calming fussy babies, and my child was a fragile package whisked out of my sight, and off to another hospital far away. Tyler lived for 10 days. He fought hard for life, that one and a half pound baby boy. In the end, death won, and DES had taken its second victim.
We Tried Again and Succeeded
I took a few years off from trying to start a family. I had grieving to do..and healing. I finally went up to the Medical school where I was first diagnosed as DES exposed and put myself in their care. There was one surgery they thought could offer me hope of having a child. It was a rare experimental surgery called a “Trans abdominal cerclage”. The procedure was so rare that they asked to film the surgery because there would be medical students who would not see a case like mine during their education. I agreed. So, I once again became pregnant, and at 11 weeks of pregnancy, I went back to the medical school and had the trans abdominal cerclage placed. Because of my medical history I was told to go to bed again and make the pregnancy last as long as I could. This procedure was a good fix. I carried my third child to term. Four years later I put myself in their care and had my last child, again at term. These two children are now young women. I feel blessed for the good medicine that allowed me to have these children.
I Am a DES Daughter
DES did not stop with my body, or my children’s lives. My mother has been diagnosed with breast cancer, something that her DES exposure has put her at risk for. She has had treatment and it looks as though DES will not get to claim her as yet another victim.
My innocence was taken by DES. My first two children died due to DES. My mother has suffered due to DES. I do not consider myself a victim of DES, however, I am a DES Daughter.
Dear Holly – what a horrendous story – and one you all did not ask for!!!! I am so sorry to have read about your journey – must have been devastating. And what is even more mindboggling is the fact that Eli Lilly are still trying to worm their way out of all responsibilities. The human suffering they have brought upon generations should at least be acknowledged. I am a DES mum, similar story to start off with with my eldest daughter who has NO children! Now extremely worried about daughter No. 2 and son (No.3) plus 3 grandkids….There is nothing we can say to make all easier. We all have to deal with these horrific consequences!
Beverly, I am so sorry for your losses. We can recover, but we never forget. It does help to understand the cause, rather than be left in the dark. There is so much in my life I am grateful for…I am very grateful that I was able to share my story in the hopes that it helps others.
I cried when I read that you lost your precious babies. I have lost all of mine. So glad that your mom knew what she had taken with you and took steps to help you.