What is intersex?

Intersex, or disorders of sexual development, encompasses a variety of “conditions that lead to atypical development of physical sex characteristics,” according to the American Psychological Association.

In layman's terms, many babies with intersex conditions are born with genitalia that resemble some combination of male and female reproductive organs.

The American Psychological Association and the Intersex Society of North America acknowledge that it's hard to determine how many babies are born with intersex conditions, because the government does not track those statistics.

“Here's what we do know: If you ask experts at medical centers how often a child is born so noticeably atypical in terms of genitalia that a specialist in sex differentiation is called in, the number comes out to about 1 in 1,500 to 1 in 2,000 births,” the society's website said.

Premature twin babies were born in Greenville on Nov. 20, 2004, each weighing less than 2 pounds.

Weeks after their birth, the twins' mother stopped visiting them in the hospital. She was nearly impossible to reach by phone, a Department of Social Services report noted. Their father wasn't around either, but the worst wasn't over yet.

One of the twins, a girl, eventually died. The second child, called M.C. in court records to protect his identity, spent 21/2 months in the Greenville Hospital System. The infant posed experts with a medical mystery. Doctors couldn't figure out if the baby was a boy or a girl.

On Tuesday, the Columbia couple who eventually adopted M.C. from state custody in 2006 filed what might be a one-of-a-kind lawsuit against the Medical University of South Carolina, DSS and the Greenville Hospital System. They say the defendants carried out an “irreversible, painful and medically unnecessary” sex-assignment operation on their son before he was old enough to choose a gender himself.

M.C. was born with a rare intersex condition called ovotesticular disorder of sexual development. It affects only one out of every 83,000 babies, the Intersex Society of North America estimates. He had parts of the male and female reproductive systems.

Court papers say physicians alternatively identified M.C. as male and female in medical records. There was no clear indication that the child was more male than female, or vice versa, at the time of the surgery in Charleston, the lawsuit alleges.

Surgeons removed evidence of M.C.'s male reproductive organs when he was 16 months old, but it is not clear why doctors ultimately decided on assigning the child as a female. Medical records included in the lawsuit show that physicians working with M.C. indicated there “was no compelling reason that she should be either male or female.”

The Crawfords initially raised M.C. as a girl, although, “It became clearer and clearer over time that he was letting us know that his gender was a boy,” Pam Crawford said in a telephone interview.

For example, he played with typical “boy toys,” wore boy clothes and always dressed up as a superhero for Halloween, his mother said.

Now, “M.C. is living as a boy with the support of his family, friends, school, religious leaders and pediatrician,” according to court records. He is in first grade. The Crawfords filed the medical malpractice lawsuit Tuesday morning in Richland County Common Pleas Court.

A separate federal lawsuit was filed in Charleston, alleging that M.C.'s constitutional “procedural due process rights to bodily integrity, privacy, procreation and liberty” were violated. The federal lawsuit names MUSC Drs. Ian Aaronson and Yaw Appiagyei-Dankah as defendants, as well as Dr. James Amrhein of Greenville Hospital System and former DSS Director Kim Aydlette.

Meredith Williams, Candi Davis, Mary Searcy, all DSS employees involved with M.C.'s case, and three other unidentified DSS employees, are also named as defendants. The lawsuits seek unspecified damages.

MUSC and the Greenville Hospital System issued statements saying that the hospitals would not comment on the pending litigation. A call to the Department of Social Services was not returned.

The lawsuit does not specify who paid for the surgery but alleges that the three doctors named as defendants “formed the treatment team that ultimately urged SCDSS officials that M.C. undergo sex assignment surgery in order to make his body appear female.” At the time of the operation, the child was in custody of the state, which authorized the recommended procedure.

The Crawfords said they hope to set a legal precedent that sex-assignment operations should not be performed until a child is old enough to make a choice.

“His choice has been taken from him. It's too late for our child. We want it to stop for other children,” Pam Crawford said.

Mark Crawford said the decision to make M.C.'s operation public wasn't easy, and the family is trying to protect their son's privacy during the court case.

“Developmentally, as appropriate, we'll try to explain these things. I think M.C. understands that his body was kind of in between male and female. ... I think he understands that's the way nature made him,” he said. “But when it comes to explaining surgery and lawsuits, that will have to wait.”

The lawsuit may be the first of its kind in the nation, according to lawyers for the Southern Poverty Law Center, a nonprofit group helping the Crawford family file the lawsuits.

Alison Piepmeier, director of Women's and Gender Studies at the College of Charleston, who is not involved in the Crawford case, said the lawsuits are evidence that gender-identity issues are being discussed more openly than ever before.

“There are a small but significant number of people born every year who are called intersex,” Piepmeier said. “What the experience that these folks show us is the categories that we assign — male and female — may be too limited.”

Reach Lauren Sausser at 937-5598.