THE BLOG
08/21/2014 10:42 am ET Updated Dec 08, 2014

Born Without Arms or Legs: The Secret Legacy of Thalidomide

Her Story, Our Story: In this co-authored piece about sedatives during the Baby Boom, Eileen Cronin and Leslie Mink share personal stories about thalidomide. Michele Botwin Raphael contributed her writing, editing and content curation.

One of the horrific and still negligently under-reported legacies of the Baby Boom era was the widespread use of thalidomide by pregnant women, which led to countless, yet still vastly undocumented, cases of children born in the United States and abroad with severe deformities, including the lack of limbs, hands, fingers and toes.

The drug, developed by The Grunenthal Group in Germany and distributed out of Cincinnati, was touted as the "first safe sleeping pill" for pregnant women and, reportedly, approximately 2.5 million tablets were given to at least 20,000 patients in the U.S.. Yet, shockingly, the number of reported cases of affected infants -- now adults -- in the U.S. remains as low as 17. I am one of them. Leslie Mink is another.

We want to call on the media for deeper coverage of the truth about thalidomide and its U.S. victims, along with a meaningful gesture of apology -- and ideally compensation -- from Grunenthal, the company responsible for developing and mass marketing the drug that has had such devastating effects on the lives of so many -- reported or not.

Before "Diversity": "Thalidomide Babies"

Before the birth of the concept of "diversity" came the birth of a legion of Baby Boom children like us. We were labeled "Thalidomide Babies." Cripples. Half a century ago stories such as ours were the stuff of nightmares, human oddities and empty inspiration. But the "stories" were real. So were the nightmares. And so were we. Leslie was born in Washington, D.C., in 1959, without hands; I was born in Cincinnati, in 1960, without lower legs. We each struggled within in a society modeled on a corrupted version of Darwinian theory: Survival of the Fittest -- Diversity Be Damned.

But How Did This Happen?

A rearview glance at '50s and '60s mainstream culture reveals tract housing, hair spray and station wagons. For most women, intellectual acumen was weighed not in college grade points but in karats. Career girls were tracked into secretarial programs emphasizing good hygiene, neat handwriting and the discreet placement of Kotex products. Ambitious girls dreamed of becoming stewardesses, whose job duties included plying passengers with alcohol.

The prize for the successful college grad? A kitchen sink with a sudsy mess of baby bottles, an orchestra of boiling pots and a white flag of surrender: the bleached diaper on a clothesline.

To temper the drudgery of a "Revolutionary Road" existence, the '50s ushered in a host of sedatives. Miltown was the top-selling "minor tranquilizer." Named for a New Jersey suburb, Miltown spawned a cocktail party phenomenon that exploded in Hollywood with the creation of miltinis (martinis with a pill in place of an olive). In a decade defined by McCarthyism, Marilyn Monroe and Baby Boom, sedatives controlled that most dreaded symptom of all: emotion.

Times were ripe for the entry of a drug called thalidomide, one that promised to quell nerves, quash morning sickness and thwart miscarriages. So comfortably sedated were Americans that we had not even considered the possibility of a thing called "side effect." And from our own soporific came one of the greatest nightmares of modern medicine: babies deformed by a "remedy." We were called "monsters" by physicians in medical journals.

Separately and alone, Leslie and I thrived by either embracing or rejecting the indelible labels slapped on our foreheads. Where in a Cover-Girl world did gals without arms or legs fit in? Like our able female friends, our voices were stifled, but unlike most we were deemed dysfunctional, broken, damaged from the start.

In the quiet reflection of the 50-some years of contemplation that only another "monster" could appreciate, Leslie and I discovered that we were not so much handicapped as we were gifted by being not-the-same baby, girl, woman, wife, employee or mother as our contemporaries, sisters and friends.

My Story, Her Story

I was born without lower legs and a hand with missing fingers that we called "the claw." One of 11 otherwise healthy offspring, I aspired to become a poster child. Thankfully, I was not "discovered" by the same organization that even recently has posted banners in shopping malls that said: "Eradicate Birth Defects!"

Leslie was born with an underdeveloped upper body. Her shoulders and arms are thin as reeds, and she has no hands. Her right arm goes straight down with a slight curve at the elbow and it has one finger -- possibly a thumb -- on the end. Her left is curled up with one finger at its end -- a pinky. Neither arm bends. When she was young she broke her right arm six times and her left arm once. She rarely noticed people staring, but when she did, she stared back until they looked away.

Although she was told that her birth defect was a fluke, she suspected that thalidomide caused it. No one else in her family or extended family had a birth defect. A boy who lived near her childhood home had a body similar to hers. She saw him riding a bicycle by her friend's house, but Leslie never had the chance to meet him. She still wonders what she might have learned from him if they had met.

Leslie's father worked and helped take care of the children. He was a vivacious man who loved to laugh. He had a temper and was a bit impatient, but Leslie was closest to him. Neither parent ever made her feel they were ashamed of her. Leslie's younger sister helped her when Leslie needed assistance. Their mother was a functioning alcoholic, who was popular and personable sometimes, otherwise she was asleep. On her best days, Leslie's mom was creative, figuring out how Leslie might do things with only two fingers, like putting on a coat. Leslie could have had prosthetics but she didn't need them and didn't like the way they looked. Her cousin once told her that she remembered seeing Leslie's mom crying to Leslie's aunt because she worried about what would happen to Leslie as an adult. Thanks to her mom, Leslie kept her place in a mainstreamed public school.

Perhaps because her mother showed Leslie love in the face of her own conflict -- within a community that also may have judged her mother harshly -- Leslie always had close friendships with women. Her second grade teacher chose a classmate named Kathy (née Hancock) Rados to help her. Since then, they have been best friends. In fact, Leslie has never wanted for female companionship. Maybe because of the protection that other female friends offered, Leslie was never teased. She spent summers swimming in the community pool, and today she travels the world with her girlfriends.

As an adult, Leslie has been a painter and a pottery maker. She drives a Honda Accord with no adaptors. Since she was 18, she has worked in an administrative capacity, rising to the position of office manager of a public interest law firm that protects wildlife. Her handwriting is lovely, and she types 45 words a minute. Leslie's greatest triumph was raising two sons as a single parent. Now 18 and 22, they love her unconditionally -- and are emotionally capable young men who also love their partners wholeheartedly.

My story is similar to Leslie's, except that I wasn't always so compliant. I refused to accept my mother's explanation of my missing lower legs, which was "because Baby Jesus picked you to carry the cross." I did not aspire to be a martyr. I struggled with weighty and painful prosthetic legs. It took over 50 years, but I did verify thalidomide as the cause of my missing lower legs and fingers.

As a gabby girl with an inquisitive mind and a mother who battled mental illness while raising 11 children, my lack of lower legs were less of a problem than the fact that I constantly asked questions that no one wanted to answer. I never did get my father's poker face down. Had flaming coals been poured down the back of his buttoned-down shirt, Dad would not have flinched for fear of appearing anything other than quietly grateful. He was never going to tell me, and Mom's religious explanation angered me.

Hungry as I was for a scientific explanation, I had to overcome my fear of sensationalistic articles about "Thalidomide Babies," such as the one about an infant injured by thalidomide who had been abandoned in a dumpster. After earning a doctorate in psychology, I published a personal essay in 1987 in the Washington Post, which received national media attention and was reprinted in major newspapers, including the Los Angeles Times. At the time, I was recently married and was worried about passing my defects on to future children. If a drug was the cause, there would be no genetic issue.

Finally I read Suffer the Children -- a revolutionary book published in 1979 by a task force on thalidomide from the The London Sunday Times. The book revealed that a drug company in my hometown of Cincinnati, Richardson-Merrell, had pushed for FDA approval of thalidomide. Its executives forged a fraudulent paper to market the drug to pregnant women with insomnia. They recruited 1,200 obstetricians to dispense the drug nationwide. A Cincinnati obstetrician delivered two stillborns, one without arms and legs, and he called those incidences "flukes." The drug was reportedly given to at least 20,000 patients in the U.S. with approximately 2.5 million tablets dispensed. A more recent book, Dark Remedy, supported the conclusions drawn by The Sunday Times. And yet the number of injuries reported in the U.S. impossibly remains as low as 17. That figure has never added up for me. Statistically, the numbers must be far greater, possibly in the thousands.

Indeed a lawsuit filed in Pennsylvania in 2011 challenges earlier claims that thalidomide damages were the result of the drug being used or obtained abroad. Thirteen Americans currently are suing four drug companies for distributing the drug. According to the plaintiffs, "the drug -- used by pregnant women for morning sickness until it was discovered to cause severe birth defects -- affected more people in the United States than thought, and caused a wider range of deformities." This argument is consistent with the findings of Suffer the Children that stated that "many hundreds of children in Britain, the United States. Canada, Japan and elsewhere may, they believe, be suffering from faulty hearts, hearing defects, and other abnormalities that have not been attributed to thalidomide because they do not fit the most typical pattern."

Whether due to the widespread and variable side effects of the drug's damages, the fact that negative data from the "clinical studies" were not reported, the drug companies' cover-ups, the FDA's lack of protective measures for individuals included in drug research at the time, physicians' reticence to indict themselves, or parents' unwillingness to claim any connection to the drug, the result was a silent conspiracy to ignore the needs of those severely injured by thalidomide in the United States.

Mermaid: A Memoir of Resilience

In 2014, WW Norton published my memoir, Mermaid about my quest for the truth, which I needed in order to plan my own family. Now survivors of thalidomide are contacting me. Among the first was Trish Jackson, an Australian photographer, who has no arms. Using her feet, she captures haunting shots of the moon or of threatening skies. She calls them Footsie Photos.

I'm intrigued by the contrast between those survivors born in the United States vs. those born in England, Scotland, Canada, Mexico or Germany. Other countries' survivors identify themselves with thalidomide easily, even on their Facebook or Twitter profiles. Many of them know each other. A recent, moving BBC2 documentary titled "Thalidomide: The Fifty Year Fight" shed important light on thalidomide and survivors in Britain. No such documentary has been made about cases in the United States, although the New York Times produced an impressive video report in 2013 on the horrendous history of thalidomide, as well as its continued use for treatment of leprosy and cancer, among other diseases. The report also documents that usage in Brazil has inadvertantly caused over 100 recently reported cases of infants born with deformities due to the use of thalidomide. Many of those of us born in the U.S. continue to have only a murky understanding of the cause of our physical differences, much less a willingness to identify with it a connection to thalidomide.

When I identify myself as a survivor of thalidomide, people quickly mention someone they know who was born in the U.S. in the '50s or '60s with a deformity. They speculate that thalidomide was involved, which makes me wonder how many more of us there are. When I was younger, a woman in Cincinnati called my mother to say that she'd been given thalidomide and that her daughter was born with multiple defects. She wanted to know if Mom was given thalidomide by her doctor. Because Mom took so long to tell me that she was given the drug, I'm not sure how to interpret my mother's current explanation: a stewardess on a plane to Germany gave her the drug for nausea and anxiety. I respect Mom for finally telling me she took thalidomide. She faced harsh criticism from people who didn't understand how women were used in the so-called "clinical trials." Many mothers did not wish to remember taking the drug.

The bombastic news coverage didn't help the situation. Even peer-reviewed medical journals referred to injured infants as "monsters," as if the infants were responsible for their own deformities. More likely the infants reminded obstetricians of medicine's role in causing those defects. The root word of teratogen (drugs harmful to infants in utero) is terato -- which means "monster" in Greek. It is largely due to thalidomide that teratogens are now strictly monitored and not to be prescribed to pregnant women or those likely to become pregnant.

Media Coverage, Apology Needed

Leslie and I both made our way without assistance, and we are among those who should be thanked for our role as the "test cases" that brought about regulatory practices in the U.S. in the administration of drugs to pregnant women. Now, we would like to call on the media for deeper coverage of the truth about thalidomide and its U.S. victims, as well as on Grunenthal -- which developed and mass-marketed the drug that has had such devastating, irrevocable effects on the lives of so many -- for a truly meaningful gesture of apology -- and, ideally, compensation.

Correction: A previous version of this post incorrectly stated that a reported 20,000 pregnant women were given thalidomide. A reported 20,000 patients were given thalidomide.

Eileen Cronin is the author of "Mermaid: A Memoir of Resilience" WW Norton 2014. Already in its second printing, "Mermaid" has been selected as an "Oprah's Pick" twice. A contributor to the Washington Post, Los Angeles Times, The Daily Beast and Everyday Health, among other publications, she is a practicing clinical psychologist in Los Angeles and currently is working on a novel. Learn more about her at www.eileencronin.com and follow her @CroninMermaid.

Michele Botwin Raphael is a writer and editor, specializing in digital media, entertainment, pop culture, arts, feminism, health, sex and lifestyle topics. Formerly a staff writer and "Cybertainment" columnist for the Los Angeles Times and a features editor at latimes.com, she currently blogs for The Huffington Post and contributes to Los Angeles Review of Books, among other websites and publications. Follow her @MicheleBRaphael.