Thalidomide Caused Severe Birth Defects in U.S. Babies. Now in Their 50s and 60s, Survivors Speak Out (Exclusive)

In November 1961, Ann Morris (her name has been changed to protect her privacy) went to her ob-gyn because she was feeling nauseous. Suspecting pregnancy, the doctor gave Morris an unmarked sample of a new drug to ease her symptoms. Morris was under the impression they were vitamins.

Nine months later, she gave birth to a daughter, C. Jean Grover, who was born with severely shortened arms and legs, a rare condition known as phocomelia. She was also diagnosed with bilateral PFFD, which causes deformities in the hip, leaving one leg shorter than the other. Both conditions are specifically associated with thalidomide.

The drug thalidomide first surfaced in Europe during the 1950s. It was initially used as a sedative, but doctors discovered it was also an effective treatment for colds, headaches, nausea — and morning sickness.

It wasn’t until 1961, after tens of thousands of pregnant women had been prescribed the drug abroad, that thalidomide was definitively linked to infant deaths and severe birth defects in an estimated 10,000 children in over 46 countries — and taken off the market.

But Morris’ doctors at Cincinnati’s Jewish Hospital failed to make that connection when Grover was born. They advised that she be placed in foster care because they said she was unlikely to survive.

“It was like out of sight, out of mind,” Grover, now 60, tells PEOPLE in this week’s issue. 

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Grover — who did end up being put into foster care before reuniting with her parents — later learned that she was the fifth baby born at Jewish Hospital that same year with phocomelia. She also discovered through the book Wonder Drug, written by Jennifer Vanderbes, that there are as many as 100 thalidomide survivors in America.

“I spent my whole life questioning why I looked like the thalidomide survivors in Europe,” says Grover. “My mom would tell me about seeing pictures of thalidomide babies when she was pregnant with me. But I was told over and over again by doctors that it was just an amazing coincidence.”

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“Other countries have provided assistance to survivors,” Grover says. “But the U.S. has done nothing because it was so well swept under the rug.”

According to author Vanderbes, the drug was being distributed in the U.S. under the guise of clinical trials. Although the FDA learned about the birth defects in 1961, Vanderbes's research shows that the agency didn’t move to recall the drug until the summer of 1962.

“The FDA has adamantly stated for decades that only 17 Americans were harmed by thalidomide,” Vanderbes tells PEOPLE. She estimates that the real number may be as high as 200, with some 2,500 U.S. doctors informally handing out unmarked samples. “They never told the women what it was when they took it, and they never went back and told them what they’d been given after the fact, when they knew how dangerous thalidomide was.”

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As she grew up, Grover learned to walk using prostheses on both legs; she has never needed arm prostheses. She went on to graduate from college, launch a successful career in graphic design and marketing, and raise four children of her own. 

She started using a scooter after worrying about falling while pregnant, and has learned to compensate and manage her day-to-day challenges in various ways. Still, it's a constant struggle.

“I’m able to contort my body around to dress myself relatively independently now,” says Grover, who drives a van with hand controls and a lift. “But make no mistake, I’m pretty messed up. I can laugh about it, but I do have a lot of things that I work around every day.” 

Today, she serves as a board member for U.S. Thalidomide Survivors, which aims to raise awareness and secure government aid and health care support for survivors in their later years. The organization — which released the documentary Thalidomide in the USA: The Forgotten Survivors — is planning to meet with members of Congress in September about securing assistance for survivors across the country.

“The federal government dropped this case without ever fully investigating the drug companies and what they had done and how wide the distribution had been,” says Grover. “This was the entire system letting us down.”

For the full story on C. Jean Grover, pick up the latest issue of PEOPLE, on newsstands Friday, or subscribe here.