For almost 70 years, women with a hearing-loss disease called otosclerosis have had to choose whether to become pregnant or to retain their hearing. That choice, it turns out, was based on Nazi junk science. It took a Jewish otologist, who gathered his research data in Israel, to figure that out.
Otosclerosis is a condition in which one of the bones in the inner ears, which should vibrate to transmit sound, instead becomes fused. The condition is found twice as often in women as in men, and most of the time it begins when she is between 10 and 40 years old, Dr. William Lippy of Ohio told JTA in a telephone interview.
Lippy, like all medical students in his specialty, had been taught that women should be discouraged from having more children once their disease was diagnosed, even thought it can be remedied through surgery. The connection between pregnancy and progressive deafness from the disease was unquestioned, he said.
An active member of the Jewish federation in Youngstown, Ohio, and on the national board of what was then called United Jewish Philanthropies, Lippy first went to Israel in 1968. Struck by what he called the lack of sophistication in some hospital procedures, he returned twice a year to perform surgery to correct otosclerosis.
“While I was working in Israel all those years, I saw many ultra-religious women who had multiple pregnancies” and suffered from otosclerosis, he said “It took a long time, but it finally dawned on me that their hearing was no worse than that of women who had one pregnancy, or two pregnancies — or even no pregnancies.”
Puzzled by what he was seeing, about a year ago “I designed a retrospective, age-matched study,” Lippy said. All the women in the study had otosclerosis; the study group had children and the control group did not.
“The results of the study definitely prove that women with children did not hear any worse than women without children,” Lippy said. “And there was no correlation between hearing loss and the number of children.”
Next, Lippy decided to trace the mistake. He eventually found its origin in a scientific paper published in Germany in 1939.
The link between otosclerosis and pregnancy, Lippy learned, was forged through misunderstanding and hardened by fascism.
The results of Lippy’s study were released at a conference earlier this month.
People tend to date events in their lives by their own personal histories. “Women remember life events according to their pregnancies,” Lippy said. “When you take a history and say ‘When did you notice your hearing loss?’ a woman will say ‘During my first pregnancy,’ just as she’d say ‘and I had a broken leg after my second pregnancy, and during my third my husband changed jobs.’ “
The 1939 paper described the results of a meeting where such evidence was presented.
“There were nine doctors at that meeting, and only three felt that otosclerosis was made worse by pregnancy,” Lippy said. “But there was a Nazi Party administrator there, and he made a eugenic decision to eliminate the disease from the Aryan race.”
All pregnant women with otosclerosis had to report to a government agency, the Nazis decreed. The study reported that 79 such women presented themselves; 69 of them were made to have abortions and 23 were sterilized as well.
Since then, the connection between pregnancy and otosclerosis has been accepted without challenge.
“I was trained in New York 40 years ago, and we were all taught that otosclerosis was made worse by pregnancy,” said otologist Dr. Noel Cohen of New York University Medical Center. “It became common knowledge.
“I never carried it to the extent of telling people not to have children — I thought that was a repulsive idea, and not warranted — but I have spoken with many of them about how you should calculate this information, factor it into your decision to have more children.
Cohen was at the meeting where Lippy presented his paper.
“Now I will tell them not to pay any attention to what they’ve heard about pregnancy making otosclerosis worse,” Cohen said. “It’s really not so. Otosclerosis is a genetic disorder, but it does not appear to get worse with pregnancy.”
Lippy’s pleased with his findings, but he has some regrets.
“I discouraged women from getting pregnant or having more pregnancies,” he said. “I feel very badly that I ill advised women for so many years.”
But now he has good news for his patients.
He talks about a patient of whom he is very fond, a woman who has had a series of surgeries for otosclerosis. She and her husband “had two children, and they wanted more,” Lippy said.
“I discouraged her,” he said, and she did not get pregnant again.
“Three or four months ago she was in my office, and I told her the story. She said, ‘Dr. Lippy, do you mind if I use my cell phone?’
“I said, ‘No, of course not.’
“She said, ‘I want to tell my husband to come right home!’ “
The Archive of the Jewish Telegraphic Agency includes articles published from 1923 to 2008. Archive stories reflect the journalistic standards and practices of the time they were published.
