Thalidomide babies: Birth defects caused by a ‘harmless’ pill 60 years ago | Germany | News and in-depth reporting from Berlin and beyond | DW / German News

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.

Gunhild Krämer-Kornja and other children with thalidomide-related deformities

As a child, Gunhild Krämer-Kornja (circled) spent many months in rehabilitation centers

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 leads a full life: She learned martial arts and earned a brown belt in Jiu-Jitsu. For 23 years she worked at the civil registry office. She married and gave birth to a healthy daughter.

Her 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 trigger severe pain. She had to retire at 38 and is writing a book about her life with thalidomide.

‘Say goodbye now’

Klaus Michel was born in September 1961. The boy won’t survive. Say goodbye now, “the doctors told his parents. Today Klaus is 60.

He attended school and then a training center for people with disabilities. Then he worked at a computer until he got burn out. He successfully fought a substance addiction, retired early and got involved in the church community and his son’s school. He plays the tuba and exercises a lot. 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 sold in Germany.

Klaus Michels

Klaus Michels campaigns for Thalidomide sufferers 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. The staff of the maternity was all ran to look at her. That irritated Gisela, but it didn’t ruin the moment for her. “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 would be forced into a plaster corset and positioned on her back and attached to heavy prosthetics. “The tortures were massive, also psychologically,” she says. She was away for so long without her parents, she thought “they don’t want me anymore.”

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

Claudia Weinert-Hettmer and Gisela Weinert

Claudia Weinert and her mother Gisela jointly attend Thalidomide awareness events

Thalidomide was recommended for infants and pregnant women

Gunhild, Klaus, and Claudia are three of an estimated 5,000 children in Germany and 10,000 worldwide who were born with deformities. Their mothers had taken thalidomide, an over-the-counter sleeping pill and sedative produced by the pharmaceutical company Grünenthal. Four to five out of every ten children died shortly after birth.

“As harmless as a sugar cookie” is how thalidomide was advertised at the time. It was even recommended for infants and small children and for treating nausea during pregnancy. It was a big seller both at home in Germany and abroad.

Medication containing thalidomide was officially sold by Grünenthal, its partners, and licenses in more than 70 countries, according to a report from the University of Münster found. 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.” On Nov. 27, 1961, the drug was withdrawn from the market. But in some countries, sales continued for months.

Thalidomide trial's first day in court in May 1968

In a criminal trial in 1968, senior Grünenthal figures stood accused of bodily harm and criminal homicide

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 says. Lawyer Karin Buder tells 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.

Claudia 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 is like to be stared at, be helpless, and have to ask complete strangers in the bathroom to pull up your pants for because the cord attached to the zipper had 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. 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.

Actisvists 'campaign poster reading' Thalidomide.  Now is the time for the German government to negotiate '

Thalidomide sufferers have been campaigning for years to get compensation

The Thalidomide Foundation: 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 spent about 1.8 billion euros ($ 2.04 bio.) On compensation so far, the Thalidomide Foundation told DW. Grünenthal made a one-time payment of another 50 million euros 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 US.

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. The interest group of thalidomide survivors in North Rhine-Westphalia invited people to a celebration of life in Cologne to defiantly show that they are still here and alive.

Gunhild Krämer-Kornja, her husband and baby

Throughout her pregnancy, Gunhild worried that her child might not be healthy

In Nazi Germany in the 1930s and 40s, more than 200,000 people with disabilities were systematically murdered. This still resonated in the 1960s and 70s. “It would have been better if you had been gassed,” Claudia Weinert 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. Issues with ears, eyes, the heart, intestines, kidneys were all noted. 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 is assumed that survivors have experienced significant medical mistreatment. To prevent that 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.

Anger and courage

“The thalidomide tragedy will always be part of the company’s history,” Grünenthal says today. The Grünenthal Foundation was established in 2011. It supports cars, kitchens, or bathrooms and assisted travel. Over the last ten years, 700 people have received such grants.

In 2012, Grünenthal CEO Harald Stock apologized to those affected and their mothers. Many of those affected were 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.”

But Gunhild says it is 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 says.

She says thalidomide should never be forgotten. She says she doesn’t get angry anymore.

She draws her strength from different sources. “Life. Watching my granddaughter grow up,” she says. Her motto is still “fall down, get up and keep going.”

This article was translated from German.

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