Three Oklahoma women underwent lobotomies: What happened to them?
Oklahoma City — More than 60 years ago, doctors in Oklahoma City tried out what they thought could be a new standard of care for patients who were nearing death from uncontrolled diarrhea.
They drilled holes in their heads and used an ice pick to cut into their brains.
Five patients underwent lobotomies to treat ulcerative colitis, an intestinal disease that causes severe diarrhea, at the University of Oklahoma School of Medicine between 1950 and 1954. The two male patients died within a year after undergoing lobotomies, and the three female patients' stories have been lost to history.
Jim Carrier hopes someone remembers them.
Carrier, a Vermont-based journalist, found the two men's identities by comparing details from a 1956 article in the Journal of the American Medical Association with obituaries in The Daily Oklahoman archives. The women were still alive at the time the article was published, however, and the five doctors who wrote the article offered few clues that could identify them.
All three are described as “housewives.” The first was 43 when she was lobotomized on Jan. 30, 1950, following 20 years of colitis symptoms, two suicide attempts and an attempt to cure her by lowering her blood sugar until she fell into a coma. According to the article, the lobotomy was considered a success because she began to regain weight, but she lost control of her bowels.
The second woman, 28, had ulcerative colitis for six years before her lobotomy on Jan. 20, 1954. The third was 32 and had ulcerative colitis for 10 years. She was lobotomized on Aug. 27, 1954. The only additional information is that she was pregnant with her first child as of October 1955.
After more than 60 years, the odds of finding out what happened to them are slim. Still, Carrier is hoping that someone will recognize a mother, an aunt, or a patient they saw as a newly-minted nurse or doctor.
Finding out what happened to them would give a face to victims of “ignorant medicine,” he said.
“I consider it a dark corner of gastroenterology,” he said. “In part because what was really running this train was Freudian-trained psychoanalysts.”
We know now that ulcerative colitis is caused by the immune system attacking healthy tissue in the large intestine, also known as the colon. In the 1950s, however, doctors believed that the problem wasn't with patients' intestines or immune systems, but with their brains.
Sigmund Freud's ideas that bad childhood experiences led to a host of physical and mental health problems was still in vogue, and doctors believed that diseases like asthma and ulcers were caused by stress or a poor relationship between a mother and child.
In the case of ulcerative colitis, doctors came to believe that something had gone wrong during toilet training, Carrier said. Doctors observed what they thought were common personality traits in patients with ulcerative colitis, like depression, which seemed like evidence for the theory it was a mental problem, he said. Depression is common in people who have ulcerative colitis, but now it's considered a result of the symptoms, not a cause.
“You got sort of a snowballing effect and kind of an echo-chamber effect,” he said.
Those beliefs came through in the journal article about the five Oklahoma City patients. The doctors included almost no information about other factors that might be relevant to intestinal problems, like diet, but described their patients' supposed neuroses in unsparing detail: a woman had conflicts with her “domineering mother,” another was “fanatical” in her devotion to housekeeping and a man had a “deep-seated resentment” due to a conflict with his wife.
At the time, surgeons believed they could free patients of those emotional problems, and physical symptoms that they thought came with them, by cutting the links between the “rational” frontal lobes and the emotional regions of the brain. The brain turned out to be far more complicated than they realized, however, and some patients were largely unchanged, while others became almost completely unresponsive.
One of the men lobotomized in Oklahoma City lost the ability to care for himself after the surgery, Carrier said. His now-adult son remembered being frightened by the scars on his father's head, and by the change in his personality. Normally an intensely private man, he only stared vacantly when his son walked in on a sponge bath.
At least 20,000 people nationwide were lobotomized between 1936, when Dr. Walter Freeman first performed the procedure in the United States, and the mid-1960s, when it was widely discredited. The vast majority had mental illnesses that would now be treated with drugs or other therapies.
It isn't clear if other people who had serious intestinal illnesses underwent lobotomy. In the 1956 article, the doctors stated they needed more data on the use of lobotomy for ulcerative colitis, but the three female patients' results were good enough to make it worth trying on others.
“For the present, we are sufficiently encouraged to continue to carry out this procedure in certain selected cases,” the article said.
‘We owe you an apology'
While the emphasis on supposed toilet training problems diminished over time, medical schools still taught that ulcerative colitis was a psychological problem at least as late as 1960, when Carrier was diagnosed. He was 16 at the time.
“I just basically stuffed that away and assumed it was something in my character” that caused the symptoms, he said.
It wasn't until 2010, long after Carrier had his large intestine removed and a new exit created to connect his small intestine to an external pouch, that he learned that wasn't the case. He went to see a doctor about a hernia around the man-made exit, and mentioned that he had read that the problem was psychological.
The doctor “put his hand on my belly and said, ‘We owe you an apology, that's not even taught anymore,'” he said.
Some people experience worse colitis symptoms when under stress, but stress doesn't cause the disease, according to the National Institute of Diabetes and Digestive and Kidney Diseases.
Now, there are steroids and other medications can manage some patients' symptoms, though others don't experience relief until they undergo surgery to remove the colon. The surgical option already existed in the 1950s, but about 30 percent of patients still died from malnutrition, dehydration, or other complications, Carrier said.
Since the lobotomy went out of favor in the 1960s, it's become synonymous with cruelty or hubris, the work of sadists and megalomaniacs. But at the time, it seemed like a reasonable option to doctors who had no idea how to help patients who were suffering, Carrier said.
“I think that for people who were dying or intractable, they tried everything else,” he said.
Even as he relates the context, and why the doctors involved thought they were acting in patients' best interests, anger comes through in Carrier's voice — anger at medical ignorance that hurt patients, put off meaningful research and shamed people like him, who thought they were to blame for their pain.
“Do I have a right to be angry about this? I think on behalf of these women, these patients and their families, yes,” he said. “They were just victims at a dark crossroads in gastroenterology.”