Thalidomide survivors still struggle 60 years on

In April 1962, Gunhild Krämer-Kornja was born in the small German town of Allendorf. She had short arms, four fingers on each hand — some of which had grown together — and her rectum was on the side of her hip. The doctor was not sure how long she would live. A pastor was called for an emergency baptism.

But she survived, after many operations and long months in a rehabilitation center far from home. She subsequently became the first child with a disability to attend school in her village, with the janitor building a desk to accommodate her limited reach.

"Just saying it won't work isn't enough," was her mother's motto. "First we have to try it." The young girl would ride her bike and scooter, fall, but get up and try again.

During puberty, she struggled to accept her own body. She had dark thoughts and even tried to kill herself. But in the end, she survived and went on to lead a full life, learning martial arts and earning a brown belt in jiujitsu. She worked at the civil registry office for 23 years, married and gave birth to a healthy daughter.

Krämer-Kornja's body constantly has to do more to compensate for the length of her arms. She has to turn, bend back, forward and down farther when someone with longer arms can easily reach over the table, put on a sweater or put something on the shelf or pick it up off the floor. Overuse and wear and tear often trigger severe pain. She had to retire at 38, and now is writing a book about her life with thalidomide.

Parents urged to 'say goodbye now'

Klaus Michels was born in September 1961. The doctors told his parents that he wouldn't survive, and urged them to "say goodbye now." Today, Michels is 60.

Michels attended school and then a training center for people with disabilities. He went on to work at a computer, until he got burnout. He successfully fought a substance addiction, retired early and got involved in the church community and his son's school.

Today, he plays the tuba and gets plenty of exercise. He also campaigns for better medical care on the board of the Federal Association of Contergan Damaged People, contergan being the name under which thalidomide was sold in Germany.

Squeezed into a plaster corset

In May 1962, Gisela Weinert gave birth to her daughter, Claudia. When she asked the doctors whether everything was alright, the doctors gave no answer. Claudia, too, had short arms, and the staff on the maternity ward all ran to look at her. That irritated Gisela, but it didn't ruin the moment. "My daughter looked at me with clear eyes as if to say, 'Here I am.'"

Claudia had to go for rehabilitation again and again. She was forced into a plaster corset and positioned on her back, attached to heavy prosthetics. "The torture was massive, also psychologically," she said. She was away from her parents for so long that she thought "they don't want me anymore."

At home in Cologne, she first attended a school for children with disabilities, many of whom had experienced the effects of thalidomide. She managed to switch to a regular secondary school, finished her studies and now works at the university. She is a single parent, taking care of her son, Malte, while working as a special education teacher.

Thalidomide recommended for infants, pregnant women

Krämer-Kornja, Michels and Weinert-Hettmer are three of an estimated 5,000 children in Germany and 10,000 worldwide who were born with deformities 60 years ago. Their mothers had taken thalidomide, an over-the-counter sleeping pill and sedative produced by German pharmaceutical company Grünenthal. Four to five out of every 10 children who were exposed to the drug died shortly after birth.

"As harmless as a sugar cookie" is how thalidomide was advertised at the time. Recommended for infants and small children and for treating nausea during pregnancy, it was a big seller both in Germany and abroad.

Medication containing thalidomide was officially sold by Grünenthal, its partners and licensees in more than 70 countries, according to a report from the University of Münster. Thalidomide went on the market in 1957. Doctors initially observed nerve damage in adults, followed by an increase in deformities in children from 1959 onward. The cases became increasingly frequent.

On November 26, 1961, the German newspaper Welt am Sonntag reported on the "alarming suspicion against a widely used drug." The next day, the drug was withdrawn from the market. But in some countries, sales continued for months.

Anger and guilt

For many, the recall came too late. Gisela Weinert, Claudia's mother, had no idea how dangerous the tablets were that doctors and pharmacists had recommended, but she still feels guilty.

"If I hadn't taken them, it wouldn't have happened," she said. Lawyer Karin Buder told DW that people affected by thalidomide still come forward today. Out of shame, their mothers hadn't told them they had taken thalidomide, and only did once they were dying.

Weinert-Hettmer doesn't blame her mother. For those who could have done something, however, she wishes that they had to live a day like her and experience what it's like to be stared at, be helpless and have to ask complete strangers in the bathroom to pull up your pants because the cord attached to the zipper has come undone.

In 1968 a criminal trial of senior Grünenthal figures began. The nine defendants were represented by 20 lawyers. In 1970, the trial ended without a verdict, though an agreement was previously reached to pay compensation. Many families, who were joint plaintiffs in the trial, urgently needed support and their claims were threatened by the statute of limitations.

Payments to survivors in over 40 countries

Grünenthal paid 100 million German marks ($50 million) and the German government paid an additional 100 million into a foundation to support thalidomide victims. The terms of the foundation meant that victims lost the right to file lawsuits against Grünenthal. But by 1997, the money had all been spent.

The German government has so far spent about €1.8 billion ($2.04 billion) on compensation so far, the Thalidomide Foundation told DW. Grünenthal made a one-time payment of another €50 million in 2009. According to the Thalidomide Foundation, there are still more than 2,200 affected people living in Germany who receive pensions and special annual payments. Payments are also made to more than 280 affected persons in 42 countries around the world: from Egypt and Australia to Belgium, Brazil, Ireland, Mexico, Syria, Thailand, and the United States.

Self-help associations are using this year's 60th anniversary of the drug being taken off the market to talk about their lives and concerns. A group of thalidomide survivors in the state of North Rhine-Westphalia has invited people to a celebration of life in Cologne to defiantly show that they are still here and alive.

In Nazi Germany in the 1930s and '40s, more than 200,000 people with disabilities were systematically murdered — a terrible act that still resonated in the 1960s and 70s. "It would have been better if you had been gassed," Weinert-Hettmer was once told when she was 15. 

Short or missing arms and legs were immediately noticeable, but other aspects of thalidomide damage were only discovered later — problems with the ears, eyes, heart, intestines and kidneys, for example. Nerves and vessels were also located in unexpected places, elevating risks during operations. There have been studies on what is lacking or overburdened, but studies of the effects on the cardiovascular system have just begun.

Fewer and fewer doctors are familiar with treating thalidomide damage. Those without experience struggle with basic tasks — for example, where to take the pulse of someone missing arms and legs. It's assumed that survivors have experienced significant medical mistreatment. To prevent that, the Thalidomide Foundation has supported four centers of excellence in Germany. Scientists point out that many of those affected also suffer from psychological consequences, but those are not recognized in the compensation agreement.

'Fall down, get up and keep going'

"The thalidomide tragedy will always be part of the company's history," Grünenthal says today. The Grünenthal Foundation, established in 2011, supports modifications to cars, kitchens or bathrooms and assisted travel. Over the last decade, 700 people have received such grants.

In 2012, Grünenthal's then-CEO Harald Stock apologized to those affected and their mothers, though many were left disappointed. When the business magazine Wirtschaftswoche later asked whether he wanted to make amends, Stock said "we can only apologize for something if we believe we are also guilty."

An unexpected apology, six decades later

Michael Wirtz, a member of the Grünenthal family, addressed the people affected by thalidomide in a video interview broadcast at a symposium held by the Federal Association of Contergan Damaged People and unexpectedly apologized in the name of the entire family for "everything in these past 60 years."

Wirtz said those affected by the drug expected the drugmaker's owners to comment and "not hide behind a legal adviser or the Grünenthal company." He went on to say he wanted to state "in public and officially with witnesses, that I formally apologize for these issues that have happened to you and all your families."

How does Gunhild Krämer-Kornja feel about it? "The Grünenthal company messed up, released the drug that maybe could have been taken off the market faster. Money rules the world."

But now she adds that it's important to her to focus on making her own life as good as possible. "I exercise, go swimming, belong to clubs, and have lots of friends." Grünenthal helps her when she needs a special door handle or a different kind of kitchen, she said.

The thalidomide tragedy should never be forgotten, she said, but she doesn't get angry anymore. Instead, she draws her strength from different sources.

"Life. Watching my granddaughter grow up," she said. Her motto is still "fall down, get up and keep going."

This article was translated from German.

This article has been updated to include the apology made by Michael Wirtz on November 27, 2021, 60 years after Grünenthal removed thalidomide from the German market.

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