A Thalidomide Baby’s Story: Guilt at Being Whole

A Thalidomide Baby’s Story: Guilt at Being Whole

Anatomy of a Tragedy

Colin McGregor        File: Health

Thalidomide-baby-storyIt is the autumn of 1961. Bob and Anne-Marie live in a small rented apartment on leafy Atwater Avenue in Montreal. They have recently married.

They are excited and optimistic for their future. They have opened a business – they operate a small travel agency on nearby Greene Avenue.

And Anne-Marie is expecting. She is pregnant with her first child. She is due at the beginning of December.

She is lively and intelligent. In her teens and early 20s, she was considered one of the most beautiful society belles in her hometown of Toronto – often photographed at galas and premieres by glossy magazine paparazzi. She is also agoraphobic and nervous by nature. She has spent time in a mental institution – as a teenager, her socially prominent Toronto family sent her there to mask a pregnancy, and she has never been the same.

To calm her nerves, she takes a new drug prescribed by her physician – a barbiturate guaranteed by medical officials to be effective in preventing morning sickness, and with absolutely no side effects.

It is called Thalidomide.

Family and friends eagerly anticipate her upcoming arrival. She is estranged from her own Toronto kin, as they do not approve of the brash, dynamic entrepreneurial husband with a mysterious past.

So she relies more and more on her doctor, who gave her away at her wedding. He is like a second father to her. She will follow whatever instructions he gives her. With his Westmount office on Lansdowne Avenue, his bristly moustache and pince-nez glasses, this president of the Canadian Rudyard Kipling Society is a respected pillar of the community.

He would do nothing to bring harm to one of his patients – especially, to his beloved Anne-Marie, who he considers his daughter.

Bad News

But November, 1961, brings strange and frightening news. A rash of birth defects never seen before.

Babies born in Europe with flippers for arms and tiny stumps for legs. There are other strange birth defects – missing ears, malformed stomachs, mental disorders – all with seemingly no apparent cause.

The press is abuzz with theories. Some experts suggest that open-air nuclear weapons testing may be responsible. Others blame pollution.

Eventually, despite the strong denials of the pharmaceutical industry, it soon becomes apparent that all the moms took Thalidomide during their early pregnancy.

Anne-Marie’s doctor tells her to stop taking the drug. Now.

Like tens of thousands of other couples around the world, what should be a joyous occasion for Bob and Anne-Marie becomes instead a vigil of fear.

There is hope. Not all babies born of Thalidomide-taking moms emerge deformed.

Late Arrival

The expected due date passes. This baby is in no hurry to end the suspense. The nervous parents wait a day.

Then a week. Then a second week.

Finally, on the afternoon of December 22nd at the Montreal General Hospital, Anne-Marie gives birth. It is a boy.

There is a half-formed right ear; rail-thin arms; a mangled digestive system; and 4 ½ toes on each foot. But on the whole, the baby looks healthy. His limbs appear to be the right length.

These parents – my parents – have lucked out.

But many other young moms and dads do not. In this climate of fear and tragedy, they wonder why they have produced a monster. They blame themselves, or fate.

And I have lucked out. My birth defects are relatively minor. My mother’s dying wish, before she passed away when I was 11, was for me to get plastic surgery to correct my defective ear. Which I did, at the Montreal Children’s Hospital, as she lay dying of cancer. So I look even less like a freak today than I might otherwise have.

Today, at age 53, I have beaten the odds. I am still alive. Most Thalidomide babies are not.

Courage and Dignity 

The story of Thalidomide is one of greed, ignorance – and in some cases, extreme heroism. Those who have lived their lives with the most severe of these birth defects have done so with courage and dignity.

Growing up, I would sometimes run into another other product of Thalidomide, peers exactly my own age. To a person, they were all super-intelligent – Thalidomide, apparently, helped power brains even as it weakened limbs. Later research would show that 5% of us who survived childhood were, and are, autistic.

I have had gastric problems all my life, and as a child, was diagnosed with Tourette’s Syndrome. I would grow my hair long and never take my shoes off to disguise my minor flaws. But that is nothing compared to others. Not one of the Thalidomide kids I met wallowed in self-pity. One beautiful blonde cheerleader I had a crush on danced and gyrated on two canes, her arms perfectly formed but her legs tiny stumps. She was an honors student, the belle of the ball, and a proud survivor.

In the end, I would avoid being around such people. I felt guilt at having emerged from my mother’s womb physically whole.

The story of this drug begins in post-World War II West Germany. The world’s Thalidomide story is not yet over for those who made it into adulthood.

Birth of a Nightmare

Dr. Heinrich Mückter worked as a medical researcher for the Nazis during the Second World War. Stationed in occupied Poland, he’d headed up the ominous-sounding “Institute of Spotted Fever and Virus Research.”

After the war, the Soviet Union took over the eastern half of Europe. An “Iron Curtain” descended upon the continent. Germany was divided into East and West. None of the major powers had any problem with splitting the nation blamed for the Holocaust in half. They believed this would avert another war. The East was a communist state. The West began the rebuilding process. In chaos, companies creating wealth were given free rein to do as they pleased.

Chemie Grünenthal was a small family-owned company located in the tiny village of Stolberg, near the border with Holland. It started up a pharmaceutical business. Dr. Mückter, a family friend of the Grünenthal family, was hired on to develop new drugs. With his arrogant demeanor and his right eyebrow permanently arched in contempt, he intimidated all he met.

Soon he stumbled on a chemical compound that induced sleep in lab animals. There were a lot of drugs on sale that did the same called barbiturates. But they all had dangerous side effects, and could kill if taken in large doses. This new discovery had one advantage. No matter how hard Dr. Mückter tried, he could not give a lab rat a big enough dosage to kill it.

The West German government, still recovering from the war, did not have the means to test new drugs for safety. They took the pharmaceutical company’s word that any new drug would do no harm. Chemie Grünenthal promptly had their new discovery, Thalidomide, aggressively marketed.

“The Babysitter”

Sold under 37 different names, the drug was recommended for flu, coughs, colds, asthma, headaches, anxiety and insomnia. It was available without a prescription. It was soon very popular in South America and Europe.

West German parents would pour Thalidomide down the throats of their children to keep them quiet. Parents called it “The Babysitter.” Ads in Britain displayed a small child taking a bottle of the drug from the medicine cabinet, boasting that the drug would save children’s lives because it was safer than other sedatives.

In August of 1958 Chemie Grünenthal sent a letter to doctors declaring that it was the best drug available for pregnant mothers suffering from morning sickness.

In 1958 Horner Ltd. Of Montreal, working in tandem with the American pharmaceutical giant Richardson-Merrell, began selling Thalidomide in Canada under the name Talimol.

No one at Horner knew of the baby girl born in Stolberg, West Germany on Christmas Day in 1956. Her father worked for Chemie Grünenthal, and he had brought home free samples for his pregnant wife before it had even hit the market. Their baby was born without ears.

She was the first of thousands of victims – thousands born dead, countless others born malformed.

Soon, physicians in countries where the drug was sold noted rare birth defects in staggering numbers. Babies’ hands and feet were directly attached to the body, a condition called phocomelia. Before Thalidomide, the defect appeared in 1 out of 4 million babies. Now, it was an everyday occurrence in Europe’s maternity wards.

Reports of such defects poured into the offices of Grünenthal, The company aggressively suppressed the information. In the pre-Internet era, this was far easier than it would be today.

But Grünenthal could not keep the drug’s side effects secret forever. By the end of the summer of 1961, the rumors had become so strong that the drug was finally placed under prescription in West Germany. It was still available for sale; physicians in other countries were kept in the dark.

Headline News

On November 26, 1961, news of these widespread birth defects hit the headlines.  Dr. Widkund Lenz, a Hamburg pediatrician, had quietly amassed evidence of 161 malformed births associated with Thalidomide. He was harassed by Dr. Mückter, but he kept traveling, interviewing traumatized parents anyway.

When a major newspaper, Welt am Sonntag released Dr. Lenz’s findings, Dr. Mückter and Chemie Grünenthal launched a mudslinging campaign. Dr. Lenz was depicted as the “idiot” son of a Nazi geneticist. These attacks would continue for 10 years.

When the newspaper article appeared, Thalidomide was immediately banned for sale in West Germany.

The bad news soon spread overseas. In March of 1962, Thalidomide was withdrawn in Canada.

It was eventually learned that Thalidomide’s negative effects on pregnant women took place early in their pregnancy – in fact, in most cases, before they knew they were pregnant.

No country kept a registry of defective births at the time. So we can never know how many Thalidomide babies were actually born. The number is believed to be in the tens of thousands. Many babies were born with no defects, or with minor defects like my own. About 4 of 10 did not survive their first year. In Canada, about 100 severely deformed victims are members of the Thalidomide Victims Association of Canada. There are thousands of known living victims in Germany and elsewhere.

As the world recoiled in horror at the scope of the tragedy, East Germany’s communist government crowed with glee. Thalidomide was never sold on their side of the Iron Curtain. For years, communists would cite this as an example of why their system was superior to decadent western capitalism.

Shriners

Montreal’s Shriners Hospital became a world leader in surgery techniques to improve the lives of Thalidomide kids. These techniques often involved artificial limbs. One of the first victims Dr. Lenz identified and visited personally was Randy Warren, the son of a Canadian military officer stationed in Soest, West Germany.

With small arms, stomach malformations, 4 fingers on each hand and feet attached to his hips, this playful, blond baby needed surgery just to keep his spine aligned. He would spend much of the first 15 years of his life at the Shriners, undergoing 32 surgeries. Fitted with artificial limbs he could not master, he would struggle.

Randy learned he was a Thalidomide kid at age 9, when he read it off the chart on his hospital bed. His whole world was the Shriners Hospital. His friends were all nurses. He hated men, because all his surgeons were men. Much of his youth was spent showing his deformed naked body to teams of male doctors from around the world. Randy felt like a sideshow act.

As an adult, he became an ardent campaigner, raising awareness of adverse drug reactions, lobbying for tougher drug approval procedures.

Court Action

Lawsuits against all the pharmaceutical companies involved went on for decades. The first Canadian test case involved Quebec’s Denis Harvey, 11 when his family sued. Denis’s brain nerves were so damaged he could not laugh or cry.

In Quebec the state of limitations for suing Horner expired 12 months after the injury concerned – when Thalidomide babies were only 3 months old. So Denis Harvey’s family and other victims sued the American licensee Richardson-Merrell. They settled out of court. Families that settled lawsuits were sworn to secrecy.

In 1968, West German prosecutors charged Dr. Mückter and 8 other Grünenthal executives with a wide array of crimes.

The defendants argued that the birth defects were the mothers’ fault. In fact, Grünenthal’s lawyers claimed, the drug had salvaged the lives of malformed fetuses that would have miscarried. Dr. Lenz’s testimony was excluded from the trial. Journalists complained that they were threatened by Grünenthal thugs. Hundreds of witnesses were called.

In the trial’s third year, the judges suspended proceedings “in the public interest.” It was more important to overhaul the drug approval process than to revisit past errors, they said.

There are Thalidomide success stories – doctors, writers, teachers. But they are the exception rather than the rule. In Brazil, which had no welfare provisions to speak of until recently, most victims ended up as street beggars. The courage of the members of the Thalidomide Victims Association of Canada cannot be understated. Here as in other nations, compensation is still an issue.

Many survivors have lived all their life with their parents; as parents die, the survivors, now in their 50s, require more government assistance than ever. Finally, approaching old age, their plight is being recognized by governments. Finally.

Source for some facts:

Dark Remedy: The Impact of Thalidomide and its Revival as a Vital Medicine 

 by Rock Brynner and Trent Stephens.

Basic Books, New York, 2001.

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