About 100,000 people in the United States have the sickle cell disease, and roughly 90 percent of them are Black. In this investigative feature, the first part in an ongoing series, Eric Boodman speaks to 50 women with the illness about the challenges of accessing non-coercive, non-judgmental reproductive care. They describe being pressured into having tubal ligations, hysterectomies, and abortions:
Some stories carry echoes of “Mississippi appendectomies” of the mid-20th century, in which Black women would go in for a different procedure and wake up to learn that their uterus had been removed. It was a sickle cell crisis that brought Shirley Miller into a hospital in West Palm Beach, Fla., around 1984. She was 26 or so, newly married, and a few months pregnant, in so much pain and on so much medication that her consciousness was flickering in and out. She remembers being informed that the doctors were going to give her an abortion. When she came to, she learned that they’d tied her tubes as well. Her then-husband had given consent.
“They didn’t believe that I was ever able to carry a child. But whose decision is that to make?” Miller said. She doesn’t tell this story when she gives talks as a sickle cell patient educator; she worries the audience wouldn’t remember anything else.
It happened to Tonya Mitchell twice. “You can always go back and get your tubes untied when you are ready to have more children,” she remembers her doctor in Little Rock, Ark., saying around the time her younger daughter was born, in 2004. But that wasn’t right. The procedure is considered “permanent contraception,” and involves severing, crushing, blocking, or removing the fallopian tube, disconnecting ovary from uterus, preventing eggs from slipping toward fertilization. Reattachment is possible in some cases, but by no means certain.
For Mitchell, that was a moot point: A few years later, around 2008, she felt a pain in her abdomen, and a different doctor said her left ovary was dying and needed to come out. Then, at the last appointment before her scheduled surgery, he told her that within a year, many patients like her ended up having the same issue on the other side, and suggested removing both ovaries at once.
“Definitely not standard practice,” said Cara Heuser, an OB-GYN in Utah who specializes in complex pregnancies and is a spokesperson for the Society of Maternal-Fetal Medicine, when asked about that recommendation. There are some tumors and cancer-associated genetic mutations that might have warranted discussing such an extreme procedure, but Mitchell didn’t have a family history of the cancers in question, and at her age, the benefits of keeping one healthy ovary outweighed the risks.
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