Lawyers prepare for medical malpractice trial in rare ‘intersex’ lawsuit

M.C., pictured here, was born with a rare intersex condition. He had both male and female reproductive organs. His adoptive parents have filed a lawsuit against two hospital systems and the S.C. Department of Social Services for assigning him the female gender before he was old enough to choose for himself.

A Richland County jury may decide later this year if the Medical University of South Carolina, Greenville Health System and the state child welfare agency are guilty of medical malpractice for removing a baby’s penis before he turned 2 years old.

Pam and Mark Crawford say surgeons in Charleston and Greenville performed unnecessary sex assignment surgery on their son — named M.C. in court records — when he was 16 months old. M.C. was born with both male and female reproductive organs, but “there was no medical necessity to remove any of his genital tissue,” his adoptive parents said in their lawsuit.

Doctors should have let M.C. eventually choose a gender for himself, they contend.

“Our client’s penis was surgically removed for no medical reason. He’s going to have to live with that for the rest of his life,” said attorney Anne Tamar-Mattis, the legal director for Advocates for Informed Choice. “No surgery he can get can give him back what he lost.”

The Crawfords adopted M.C. from state custody after the S.C. Department of Social Services approved surgery that made him biologically female. But it soon became clear, his mom said, that M.C. wanted to be a boy — a decision his adoptive parents respected.

“He made the social transition with the name change at 7,” Pam Crawford said. “He’s just like any other boy. He’s been very well accepted in the community and the school and it’s really just not been an issue.”

The Crawfords, who live in Columbia, filed federal and state lawsuits two years ago against MUSC, Greenville Health System and DSS.

The court dismissed their federal lawsuit in Charleston earlier this year. Defense lawyers successfully argued that doctors weren’t aware when they operated that they may have violated M.C.’s civil rights.

“It’s not clear if a different court in a different time in a different place would have decided it the same way,” Tamar-Mattis said. “The court did not rule if they did, in fact, violate his civil rights. They left that question open.”

MUSC attorneys would not comment on this case specifically, but a spokeswoman for the hospital said, “If at any time there is controversy or disagreement about a care plan, the case can be referred to that ethics committee for a decision.”

A spokeswoman for Greenville Hospital System declined to comment on the case.

Meanwhile, the state lawsuit in Richland County is moving forward. DSS denies the allegations, court records show. The case may be tried by a jury sometime after Nov. 15.

“We do feel that our case is strong,” Tamar-Mattis said. “A lot more will come out at trial.”

This may be the first public case of its kind, she said. Similar lawsuits have been settled privately out of court in other states.

“The reason we’re doing this is so some change is made. That’s really what we see as what’s important,” Pam Crawford said. “To make a settlement and make it a private thing, it’s not what we want to accomplish with this.”

They also want money to pay for treatment that M.C. will need during and after puberty, but the Crawfords have not named a specific amount in their lawsuit. They don’t yet know what his treatment will entail or how much it will cost.

“We monitor him in terms of hormone levels, maybe once a year,” Pam Crawford said. “I don’t think there’s a specific set date (for treatment) ... but it’s coming up in the next couple years.”

M.C., now 10 years old, may testify at the trial, but he’s not overly preoccupied with the lawsuit, his mom said.

“We’re certainly not hiding it from him, but it’s not a huge concern for him,” she said. “I don’t know how much he understands of it — not all.”

The specific intersex condition he was born with, called ovotesticular disorder of sexual development, is rare. It only affects one in 83,000 infants, but an estimated one in 2,000 children are born with genitals that are “visibly intersex,” the World Health Organization reports.

“It’s something like 5 percent every year are born with genetic bodies, sexual bodies that operate differently than we’re used to,” said Alison Piepmeier, director of women’s and gender studies at the College of Charleston. “Five percent, that’s significant.”

Gender is based on several complex variables, she said, and children should be allowed time and space to express who they really are. Luckily, she said, society is talking more openly about gender identity than ever before.

“I’m seeing college students, some that I know and many that I don’t know, who are beginning to recognize themselves in a different way,” Piepmeier said. “In the last 10 years ... it’s far more visible. We’re still perhaps a little uncomfortable by it, but I’m seeing that less and less, especially among people who are younger.”

Reach Lauren Sausser at 937-5598.