DES Action, Connecticut records

DES Action, Connecticut, was part of DES Action USA, a national consumer advocacy group, whose mission is to educate and raise awareness about diethylstilbestrol (DES) in the public and medical and legal professions, support the DES-exposed population, and advocate for consumer vigilance and rights. DES is a synthetic estrogen, which was, from about 1940, prescribed to women at risk of miscarriage and, later, to promote healthy babies. Medical research has now shown that DES has adverse effects and that the approximately 10 million DES-exposed people are at risk for cancer, infertility, pregnancy complications, and other health problems.

The drug came onto the United States market in 1940 from several manufacturers, as the drug was both unpatented and cheap to produce. Despite research demonstrating possible carcinogenic effects (documented in the 1930s) and its inefficacy for preventing miscarriage in 1953, pharmaceutical companies publicized earlier and more favorable studies in their marketing and promotion. In 1971, medical researchers identified several clusters of rare vaginal cancers in some of the children exposed to DES in utero, now teenagers and young adults. The news was alarming to many of the women who had taken the drug during their pregnancies. As the women’s health movement was developing during the same years, concerned women around the country used the model of local organizing and outreach to find other DES-exposed women and their children (known as DES mothers, sons, and daughters).

One of the earliest gatherings was of the DES Information Group, founded by Pat Cody (1923-2010) in 1974, working with the Berkeley Free Clinic in California. Cody’s group soon joined with the DES Action Committee of the San Francisco-based Committee for the Medical Rights of Women, and the two groups merged into a Bay-area organization. Similar grassroots organizations were being started in Connecticut, Illinois, Massachusetts, New Jersey, New York, and Pennsylvania. DES Action National (later renamed DES Action USA) formed in 1977 with a meeting of these grassroots groups. The organization incorporated as a non-profit in 1979.

Much of DES Action USA’s early work was at local and state levels, carried out by volunteers. By the late 1980s, DES Action, Connecticut needed reorganization. According to the donors of these records, " DES Action CT was rejuvenated in the late 1980’s when DES Action USA asked DES daughter, Sally Esposito if she would be interested in helping to reinstate the CT DES Action affiliate. The national organization connected Sally with Caren Glickson and Debi Hyman, also DES daughters. Neither Sally, Caren or Debi were previously involved in DES Action USA or DES Action CT.

DES Action USA provided materials, received all donations on behalf of the CT affiliate, provided names of members and potential members to contact, offered support to help reach potential DES-exposed individuals, connected the CT coordinators with other DES chapters, and provided opportunities to meet and share personal stories with members of Congress and national DES researchers... The most recent work of DES Action CT concluded around 1994 when the CT coordinators “spontaneously withdrew” from the collaboration that had evolved over the previous five or so years." [for more backbround information on DES Action, Connecticut or its founders, see the "Organizational History" in Accession #2017-S-0043, Box 1, folder 1]

Sally Esposito is a DES daughter, a retired education consultant, a former school counselor, a disability rights advocate, and a committed community volunteer. In the late 1980s and early 1990s she found her voice as a DES activist and helped to re-organize DES Action CT, the DES Action USA Connecticut affiliate. In 1991, Sally served on the DES Action USA Board of Directors.

Influenced in part by her frustrating experiences as a consumer of medical services, DES patient, and potential DES litigant, Sally pursued a law degree late in life which she could not have done without the encouragement and support of her spouse, Mary Ann, and their “kids,” Butterscotch (the Cocker Spaniel), and Yoda (Yodie), Panache, and Comiso, their cats. Sally’s Mom, Marge, and Dad, Sal, her sisters, Jackie (also a DES Daughter) and Judy, and her nieces, Krista and Tracy (both Third Generation) rounded out Sally's law school support network. Marge was instrumental in Sally being able to confirm her and Jackie’s DES exposure and always blamed herself for not taking DES with Judy which she believed caused Judy’s osteogenesis imperfecta (OI).

Sally currently resides with Mary Ann, Yodie and Latté in New Haven, CT.

Caren Elayne Schorr was born on February 13, 1955, and grew up in Queens, New York. A highly-trained and profoundly gifted clinician, she has pursued a successful practice as a psychoanalyst and couples’ therapist for almost 40 years, in New York, Connecticut and Florida. She has been married for 32 years, and lives with her husband, Andy, in Connecticut. Caren has a talented, 29-year old daughter, Marion, who, like Caren, graduated from Wellesley College. Interwoven with all this success, one might say haunting Caren’s life to this day, has been a near-continuous succession of medical problems. Many of these are clearly linked to her mother’s use of DES during pregnancy, while others were never so clearly linked, but the suspicion of a connection to DES has fostered an ever-present anxiety.

Caren was the second of three daughters born in New York City to Morris (b. 1924) and Elizabeth Schorr (b. 1925). Caren’s mom suffered a miscarriage after the birth of her first child, Audrey. Elizabeth’s obstetrician prescribed DES early in her next pregnancy to prevent another miscarriage. It is telling that Elizabeth rarely consulted doctors or took medications of any kind before the DES (or to this day). She really wanted to protect her second pregnancy.

Caren was an apparently healthy, and unusually outgoing, baby. She lived in an apartment in Pomonok, Queens until age 3. The family then moved to Bayside, Queens, where Caren attended public schools, graduating from Benjamin Cardozo High School in 1972.

As soon as Caren started menstruating, she began struggling with premenstrual fevers that were never understood. There is no way to know if this early, idiopathic symptom had anything to do with DES exposure. However, soon after Caren arrived at Wellesley in 1972, Elizabeth notified her that an article in The National Enquirer, of all places, mentioned DES exposure and its potential link to cancer. That started a traumatic series of appointments to determine if there had been any damage from the DES.

Yes, Dr. Anne Barnes, at Massachusetts General Hospital, found adenosis tissue and other irregularities, but she was unsure what that would mean for the future. Very little was known about DES daughters. However, constant tests to understand the extent of irregular vaginal tissue, precancerous cervical biopsies, monthly fevers and a stenotic cervix took a toll on the young college student.

There were many other problems directly related to the DES exposure, some too painful and/or private to discuss in a public forum. Suffice it to say, the trauma of DES had begun, and it has never stopped.

Fast forward to graduation from Wellesley College in 1976. Caren immediately entered the doctoral program in psychology at The Institute of Advanced Psychological Studies at Adelphi University. She received a Master’s degree in 1978, and a doctorate in 1981, after completing her internship at St Luke’s Hospital in Manhattan. Then, Caren started working at Hall Brooke Psychiatric Hospital in Westport, Connecticut.

Caren married Andrew Asher Glickson (b. 1949) in 1985, while she was pursuing her post-doctoral certificate in psychoanalysis at Adelphi. They resolved quickly to have children, but Caren discovered that she suffers from a deformed (T-shaped) uterus, withered fallopian tubes (both clearly a consequence of DES exposure), an “incompetent cervix,” and other infertility problems. A few grueling years of infertility treatments including intrauterine inseminations and IVF trials took an unspeakable toll on both partners, in terms of time, money and emotional energy.

After a lot of medical intervention, Caren delivered her baby, Marion, on August 20, 1988. Though born five weeks prematurely, Marion thrived. Hoping soon after to become pregnant again, Caren suffered three ectopic pregnancies. The first, and most severe, landed her in the Norwalk Hospital ER with life-threatening internal bleeding. Though she was coded in the ER, an emergency laparotomy saved her life, but of course not the pregnancy. Two more ectopic pregnancies made it clear that she would not be able to have any more children. After much soul searching and couples therapy she and Andy decided not to pursue adoption or surrogacy.

Caren’s contributions to the Archive include extensive material about her lawsuit against Eli Lilly and the other pharmaceutical companies that manufactured DES. The Lilly trial ended with a hung jury and the suit was settled. Suffice it to say that the entire experience, from discovery through trial, and dealing with lawyers on both sides, was an agonizing replay of the DES trauma.

Years later, another horrific discovery reminded Caren of the layers of damage from DES. Marion had an MRI after a bout with consequences of dehydration. It was discovered that she had brain damage of unknown origin; as has so often been the case, the symptoms were found in other DES daughters, but the actual link was never clear. As it turned out, Marion appeared to have suffered brain damage in utero, but her newborn brain “re-wired” itself, and – amazingly – she has no apparent, functional impairment.

Caren started to work as a psychologist in private practice in Connecticut, starting in 1981, and - except for a one-year break after Marion’s birth – continues to practice. She is nothing if not determined. In 2011-2012, Caren started another practice, mostly treating couples monthly in Miami Beach. Although she insists that she is gliding into semi-retirement, her Florida couples practice has been an unexpected success, and she now sees patients in Connecticut and New York City, as well as Miami Beach.

Caren entered menopause at age 50. Her lifelong struggle with hot flashes, which began at age 14 as unexplained premenstrual fevers, continues at age 62, although they have recently morphed into nighttime only flashes. The unremitting, nighttime hot flashes prevent her from sleeping more than two hours at a time. In 2016, Caren underwent successful surgery for thyroid cancer, another ailment with no clear cause.

These and other idiopathic medical symptoms have prompted her to adopt a very health-conscious lifestyle. She exercises, mostly walking, daily with her good friends. She would tell you that, just as important, these walks involve continuous conversation. She maintains healthy weight. Most of all, she works at a comfortable pace, with lots of free time to enjoy swim lessons, raising dogs, going to New York and Miami Beach regularly, and enjoying time with Andy and Marion.

My name is Debra Herenlip Hyman. I was born in 1953. My brother was born 22 months before me in 1951. Sometime after my brother's birth, my mother miscarried. When she subsequently got pregnant with me, her doctor assured her there was a medication that would prevent another miscarriage. The drug she took was DES.

Money always was tight in my family. Still, my parents were adamant that I pursue a higher education; that expectation never flagged. So even when my father suddenly died when I was 16, and despite the many many obstacles in my path, I still earned undergraduate and graduate degrees by the time I was 26 years old. My degrees were in the field of psychology, and I have worked with tremendous satisfaction in that field for nearly 40 years.

In 1992, I joined my DES Sisters in a press conference with Connecticut Congresswoman Rosa DeLauro and New York Congresswoman Louise Slaughter. There, for the first time, I read my DES story. I never envisioned the extent to which merely reciting my own history would break my heart. I cried uncontrollably throughout my account until the very last word. I’ve attached here (immediately below) what I shared so publicly that day.

Fast forward to today. It is November 2017. I am blessed to have two grown 27- and 28-year-old sons, both of whom are wonderful human beings. I remain married to my husband of 33 years, and we now are enjoying the fruits of semi-retirement life. As I write this brief biography, I am resurrecting painful segments of my past, and it brings me to tears. But I also feel enormous gratitude knowing that, in the end, I survived and thrived despite my DES story. None of this could be true without the support of my women friends and women role models.

Debra Herenlip Hyman November 4, 2017

1992 Statement - Debra Herenlip Hyman

All my life I suspected I was something of a fighter. I believed I had courage in the face of fear, and that I had staying power. But only after confronting my infertility problems did I know in every place of my heart and soul that I had what it took. Only then was I certain I could go the distance.

I was 32 years old when I experienced my first miscarriage. One year later, I had my second. At that point, tests were performed, but I was told nothing was wrong. Only after three miscarriages, I learned, did doctors worry about a pattern of recurring miscarriages. Yet, after just two unsuccessful pregnancies, I was already growing concerned. That’s when I began seeing specialists. What I have since learned is that contrary to the adage, ignorance in not bliss. Knowing is better than not knowing.

Within a year of my second miscarriage, I was pregnant a third time. Clearly, my problem was not about getting pregnant, but staying pregnant. Since I was only 33, it did not occur to me to have an amniocentesis. But my doctor suggested the test was worth pursuing, and by this time I was all too willing. Who wouldn’t want to confirm that their baby was, of course, healthy.

Happily, I made it into the second trimester with my third pregnancy. We were finally on our way. I was even ready to forget the last two miscarriages. And then in one single moment in time it all changed. My baby had Down’s Syndrome.

My husband and I were bereft beyond words to learn this news. We had thought all our problems were behind us. At 20 weeks pregnant, we chose to terminate the pregnancy. After 15 hours of induced labor, my defenseless little baby boy was born dead. It is a grief and a source of guilt I will live with forever. Every so often, I have to revisit the places I go within myself to find forgiveness once again.

Shortly afterward, I found out that my mother had taken DES while she was pregnant with me. I was only vaguely familiar with the drug. As time went on, I learned a great deal, and I could absorb more of what it meant to be a DES daughter. In some ways, I was relieved to finally find some reason for my pregnancy problems. Yet, at the same time I was overwhelmed and horrified by so much that was and continues to be unknown about the impact of DES.

At age 34, I had my fourth miscarriage. By this time, I was numb. Shortly thereafter, my doctor discovered that, in fact, I did have a uterine abnormality, this even though another doctor had x-rayed me earlier and told me my uterus was normal. Again, my initial reaction was one of relief. Finally, a concrete anomaly was found, and I was told it could be corrected. That initial reaction was followed by a sickening feeling. If only I had known this sooner and had had it corrected earlier, maybe I could have been spared some of my pain. Ironically, my new knowledge turned out to be a bitter pill to swallow.

Corrective surgery was performed, and the procedure was successful. Yet, due to a highly unusual allergic reaction to a substance used during the operation, I almost died on the operating table. Eight doctors were called in to save me. I woke up with my face looking like a pumpkin, and my body was about two sizes larger than it usually is. The reaction had caused me to blow up and it took close to two weeks for the swelling to recede. The thought of being so close to death and at the same time so out of control is terrifying. To this day I am rattled by the thought of it.

Somehow, I had the strength to get pregnant again. I had just turned 35, and now felt armed with my new healthy uterus. Hope was omnipresent. Within 9 weeks, hope was reduced to devastation. Once again, I miscarried, and this time I stayed down for the count. Within moments of finding out I had miscarried, I had only to look at my husband and simply say, “Now we have to adopt.” For the first time, there was no discussion. He knew, as I knew, that the pain was finally too great, that I truly could not take any more. It was a terrible blow. I was defeated.

And then something happened that I will always recognize as the grace of God. Within five months of my fifth pregnancy loss, my husband and I adopted our first child. How we and our son came to be a family is a magical story, replete with great and wonderful events. It was an experience that restored not just my hope, but also my faith that, despite the tribulations of the past, I was going to be alright. Whether I could have a biological child, I knew then I could live with whatever the future might bring.

My husband and I knew we wanted a second child. Before pursuing adoption again, I decided that with the arrival of my son and the passage of time, I had healed enough to risk getting pregnant again. I had been knocked down, but not completely out. My sixth pregnancy was challenging, but on July 4th, six weeks earlier than expected, I gave birth to a healthy baby boy. My saga was over. I had my two healthy children, and I was grateful. I had persevered and triumphed. In the end, I was not defeated. Yet the price I paid remains with me. There were too many losses that will never by recouped. They were losses that were not necessary; losses that will quite simply always remain losses.