He said that most of his cases, between 7 and 10 a year, were children with CAH. Although he is aware of studies in which some children later identified as boys, Snyder says those sample sizes were “a drop in the bucket” and don't match up with the observations of his patients. Holding off on operating, he says, is "simply unrealistic." Not every parent shares this sentiment.
“We’re very fortunate that our son didn’t have a situation like M,” said Marie, a mother of two children with DSDs from the East Coast.
Her nine-year-old son, adopted from Asia, has a condition called gonadal dysgenesis. Marie and her partner brought him home as a little girl, but he gravitated toward boys’ clothing, and haircuts, and asked at the age of five to live as a boy. If he were operated on as an infant, he would have missed out on having a penis.
Meanwhile, Marie’s daughter, who is 12, had her genitals surgically reconstructed to look more feminine in a medical center in Asia, before she was adopted at age two. One day when the girl was six, she left the living room where she was playing to use the bathroom. Marie suddenly heard her yell. “Ow, Mom, ow.” She rushed into the bathroom and found her daughter crying, stuck on the toilet.
Marie coaxed the screaming child onto the floor and opened her legs to figure out what was wrong. The girl’s vagina, which had been a one-centimeter opening, was now four centimeters of red, open wound, “stinging and hurting and scary.”
Marie took her shocked and silent daughter to an emergency medical appointment. It was confirmed that as the little girl had grown, the tissue in her vagina, which was inserted during her operation, was not stretching at the same rate as the rest of her body, and had ripped.
Luckily, the wound had torn cleanly. Marie took her daughter home; it took a month to heal.
About a year later, nerve endings emerged at the surface of the girl’s vagina, forming sensitive nodes. She could not ride a bike, struggled to wipe herself with toilet paper and avoided restrictive pants like jeans. The nodes reduced after she turned nine, but she is still “hypersensitive” around the groin area, according to Marie, and refuses to wear clothing like skinny jeans that are popular with the other girls at her school.
Vaginoplasties are widely acknowledged by surgeons to have a high risk of stenosis—the narrowing or loss of flexibility of the vagina, often accompanied by scar tissue. There are also fears that some surgeries, in particular those the clitoris, will reduce sexual sensation. Surgeons say their new techniques spare nerves, unlike the older, outdated procedures.
“It’s safer than it used to be,” Husmann said. “Do we have adequate tests on sensitivity? It’s very difficult to do those tests.”
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“M and his supporters clearly do not agree with what has long been the dominant treatment plan for children born with intersex conditions,” states Amrhein’s brief in the appeal of the federal court’s decision to accept M’s case.