Kaye Blegvad for BuzzFeed News

Should Doctors Operate On Intersex Babies?

M.C. was born with ambiguous genitalia, a rare condition that doctors addressed with surgery. Now, in a landmark lawsuit, M.C.’s parents are challenging the medical mainstream: Why does a surgeon decide what sex a child should be?

Pam Crawford first saw M.C. nine years ago, on an adoption website for kids with special needs. The photo showed a toddler in a chair, curly black hair pulled tight into pigtails, staring at the camera with a dead-serious expression. A short bio noted that the 18-month-old didn’t like getting her fingers sticky and that she needed a family to help realize her full potential.

While many of the other kids on the site had visible health problems, Pam was unclear what this baby’s special needs could be. “Here was just this perfect little girl,” Pam said recently.

When she called the South Carolina Department of Social Services to find out more, she learned that M.C. was born with a rare condition that produced a patchwork of male and female anatomy.

At birth, M.C.’s external genitalia included a 2-centimeter penis, a small vaginal opening, an undescended testicle on the left side, both ovarian and testicular tissue on the right side, and blood testosterone levels deemed normal for male babies of the same age. The technical name for this condition is “ovotesticular disorder of sexual development.” Some of M.C.’s medical records used the more archaic term: “true hermaphroditism.”

Roughly 1 in every 2,000 babies in the U.S. are born, like M.C., with a range of traits that fall somewhere along the wide spectrum between male and female. Some doctors argue that the number of these so-called intersex babies is even higher — as many as 1 in 100 — depending on what biological markers are used to draw the line where nature hasn’t.

For babies with M.C.’s condition, doctors look at genetic, hormonal, and anatomical factors likely to play a role in whether the baby will grow up to identify as a boy or a girl. Then, if the parents agree, they’ll often perform surgery to make their anatomy fit that gender assignment.

In 2012, the most recent year that data is available, surgeons at U.S. hospitals performed various intersex procedures at least 2,991 times on children under 18 years of age, and 1,759 of those surgeries were on children younger than 5.

But many intersex patients, parents, legal experts, and bioethicists are opposed to surgical fixes, which they argue are often medically unnecessary, riddled with consent issues, and physically and psychologically harmful.

One of these critics is Pam. After hearing about M.C.’s condition, the first thing she remembers saying was, “Oh, I hope they haven’t done a surgery!”

But they had. Just two months before she saw that first photo, surgeons had removed all of M.C.’s male anatomy. “We were just like, OK, let’s deal — we’ll deal with what we gotta deal with,” Pam said. Two months later, they brought home a baby girl.

Now M.C. is a 10-year-old boy. (And because M.C. identifies as male, this article will refer to him with male pronouns.) As he begins the anguish of adolescence, Pam and her husband, Mark, are waging a landmark lawsuit against the hospitals and state guardians who decided to put their son through sex-assignment surgery.

The trial, slated for November, is the first public lawsuit to come out of a long-running scientific debate: Should intersex babies be operated on to make them “boys” and “girls”?

For decades, medical professionals have performed genital surgeries on intersex babies in the name of allowing them to lead more normal lives — knowing whether to pee in the boys or girls restroom, being able to eventually reproduce as either a man or a woman, and, in rare cases, removing the risk of dangerous tumors. They claim that the majority of people who undergo surgery, as well as their parents, never look back.

But in a cultural moment when trans celebrities such as Caitlyn Jenner, Laverne Cox, and Janet Mock are shining a spotlight on the fact that gender isn’t a simple binary, intersex advocates are fighting to get that same recognition.

Surgeries on intersex babies, these advocates argue, often cause the very shame and stigma that they claim to prevent later on in life, all in the name of sticking to social expectations around sex and gender. Let babies grow up, they say, and then decide for themselves how — and whether — to change their bodies in such dramatic ways.

The idea that sex can be assigned comes from work done in the 1950s by a psychologist and sexologist named John Money.

A fierce champion of open marriage and sexual exploration at a time when sex was taboo, Money is best known for his ideas about what shapes our personal sense of gender identity — a concept that didn’t exist before his work threw it under the spotlight.

Babies, Money argued, are not born with a predetermined gender. Instead, their gender identity develops within the first two and a half years of life, depending on how their parents decide to raise them.

“You have a person with ambiguous genitals, which society does not accept, and as a surgeon you can change it into something that looks completely normal.”

Money’s research put him at the helm of the world’s first intersex clinic, at Johns Hopkins Hospital, which started a new treatment of surgically assigning sex to infants. Despite the stellar reputation of his institution, Money was considered a radical, far outside of the medical mainstream. To get his ideas to spread, he needed a landmark case.

That case was handed to him in 1967, when a Canadian couple came to Money desperately seeking help with their infant twin boys. Both were born healthy, but a botched circumcision had burnt off one boy’s penis. Under Money’s supervision, the 8-month-old was castrated and then raised as a girl.

For the next decade Money heralded the twins as living proof that his theory held true. The so-called John/Joan case was declared a success in magazines, newspapers, and on television segments. Johns Hopkins became the center of a treatment paradigm that was quickly taken up by hospitals across the country.

The twins’ story was largely forgotten until 1997, when a reproductive biologist named Milton Diamond tracked them down — only to find that the twin who had undergone surgery had never lived happily as a girl, and in fact had undergone a painful switch to living as a boy again at the age of 14.

When Diamond found the man, named David Reimer, he had been married to a woman for four years and had undergone multiple sex reversal surgeries. The discovery sent shockwaves through the medical community.

By the time the story broke, doctors were already facing public scrutiny from a small but increasingly vocal group of adult intersex patients, speaking out for the first time against the surgeries they’d had as babies. They described lives filled with shame and secrecy, as well as physical pain, scarring, and loss of sexual sensation. Some did not identify with the gender they had been assigned at birth.

In 2004, when Reimer was 38, he shot himself. It’s unclear why: He had been prone to depression, his brother had recently died, and his marriage was failing. But his mother claimed he would not have been pushed to such an extreme if it hadn’t been for the experiment that ruined his life. “I think he felt he had no options,” she told the New York Times shortly after his death. “It just kept building up and building up.”

Six months later, M.C. was born.

M.C. Courtesy of SPLC / Advocates for Informed Choice

M.C. was born on Nov. 20, 2004, in a hospital in Greenville, South Carolina. Shortly afterward, South Carolina’s Department of Social Services started looking into possible neglect by his biological parents.

At M.C.’s birth, doctors recorded his sex as male. But they soon noted the infant’s ambiguous genitalia, and the presence of a “rudimentary” uterus that, they believed, could one day be used to bear children. His hormonal levels, however, were in the normal range for male babies, which raised the possibility that during prenatal development his brain had bathed in the high levels of testosterone that are typical for boys.

In his medical files, M.C.’s condition was initially described as “confusing,” though otherwise he was a healthy baby. After a DNA test found that he had two X chromosomes — the genetic definition of female — M.C. was described as such. But the verdict was still out on whether he should be raised as a girl.

By February 2005, when M.C. was 3 months old, his biological father abandoned the family. Shortly after, the state of South Carolina determined that his mother was an unfit parent, and he was taken into state custody. Decisions about M.C.’s medical care from there on out were supposed to be made by social workers as well as his biological mother, whose parental rights had not yet been formally terminated.

In January 2006, M.C.’s case was referred to two doctors at the Medical University of South Carolina (MUSC): a pediatric urologist whose expertise was in genital surgery, and a pediatric endocrinologist who focused on hormone signaling.

In the doctors’ notes, sex-assignment surgery was almost always presented as a given, according to the legal complaint filed on behalf of Pam and Mark by the intersex advocacy group Advocates for Informed Choice and the Southern Poverty Law Center.

“Either sex of rearing is possible with appropriate surgery,” Yaw Appiagyei-Dankah, the endocrinologist, reportedly explained to the foster mom and social worker.

“My bias at the moment is towards female, although I have raised the possibility … that there may have been sufficient testosterone imprinting to question ultimate gender identity,” Ian Aaronson, the pediatric surgeon who ultimately performed M.C.’s surgery, wrote in his notes on Feb. 27, 2006.

Though both Aaronson and Appiagyei-Dankah said it was possible that M.C.’s hormones may have already set the course for the development of a more male identity, they eventually agreed that the infant should undergo genital surgery to live as a girl.

M.C.’s biological mother signed the consent form, but according to the Crawfords’ lawyers, she attended only one of M.C.’s three medical appointments, hadn’t spoken to his physicians in two months, and missed his surgery. Social services signed off as well.

In April, Aaronson cut off 16-month-old M.C.’s penis to reduce it to the size of a clitoris, removed all testicular tissue, and turned his scrotal tissue into the folds of a vagina.

Neither doctor would comment to BuzzFeed News about the particulars of the case. But Heather Woolwine, a spokesperson from MUSC, did.

“You have to remember, there are things we know now in medicine that we may not have known then,” Woolwine said. “Hindsight is always 20/20.”

The Crawfords live in a big brick house on the edge of a lake, worlds away from the bustle of college students and dive bars in South Carolina’s downtown Columbia. Their tree-shrouded corner of suburbia is the kind of place where kids can run wild on seemingly endless yards of grass, which is the main reason Pam and Mark decided to move there.

I met Pam, Mark, and their lawyer at their home in May, while M.C. was still at school for the day. They didn’t want me to meet him. Despite the fact that their lawsuit has spurred a very public discussion about their son and what was done to his body, they want to shield him from as much of it as possible.

A psychiatrist by profession, Pam is forward and effusive; Mark a timid and self-deprecating stay-at-home dad to their five kids. They met in California in the ’90s, while Mark was studying law at Stanford University and Pam was in the Air Force, then moved to the South to start a big family.

After their first two children, the couple decided to adopt and to focus on kids with special needs. “I guess we felt pretty privileged,” Pam told me. “We were like, we have the means, we have the desire for a bigger family, and so we said maybe we should do this.”

They brought M.C. home at 20 months old. From that moment on, he ran wild with energy. “You could tell that he was gonna be kind of an explorer,” Mark said. M.C.’s first complete sentence was “It is a bug,” Mark added, laughing. “I’m sorry to say that it was in the kitchen.”

M.C. idolized his father. “He’s his number one,” Kelly Stanton, a close family friend and former vice principal of M.C.’s school, told me when Pam and I visited her home.

Getting the gender “right” isn’t the real issue.

Stanton used to live across the street from the Crawfords. On weekends she’d sometimes look out the window to see Mark walking to their pool, equipment in hand, with 3-year-old M.C. trudging along behind in a dress and work boots, carrying a toy shovel. “You’d see them marching down the street: There goes Mark, and there goes little M.C.,” Stanton said.

Pam and Mark say there was no single point at which they knew M.C. was a boy. Their oldest daughter, Abby, had always been a tomboy, and neither of them put too much stock in the stereotypical preferences that divide the genders. “He always liked trucks and cars and whatever, but still it was like, so what — so did Abby!” Pam said.

But as M.C. grew older, he began to assert his own preferences more overtly. Once he could dress himself, he eschewed his girlier clothing in favor of jeans and plaid shirts. When boys and girls divided into teams for sports, M.C. wanted to be on the boys’ side.

Most memorable for his parents was the day, at 6 years old, when M.C. asked to have his hair cut “like Dad’s.” Pam talked to him about how people might think he was a boy. M.C. said that was fine, and he got a buzz cut.

Mark struggled more than Pam did with embracing M.C.’s boyish assertions. “Strangely enough, as the stay-at-home dad, a lot of this story Pam is more in on,” Mark told me quietly, pushing back his round tortoiseshell glasses and folding his hands between his legs. “See, I didn’t want him to get his hair cut actually, very much.”

Shortly after the pivotal haircut, the family went on a trip to the Great Wolf Lodge, a kitschy indoor water park 100 miles north of their home. According to Pam, M.C. was particularly taken with the fact that, away from his school friends, no one would know anything about him.

“He wanted to go as a boy, and he really wanted a boy name,” Pam said. “I think he was kind of checking, ‘Is it OK if I do this? Is it OK?’”

Pam said all right, and M.C. passed the weekend happily, and easily, as a boy.

A few months later, while in the first grade, M.C. decided he wanted to be a boy all the time. Pam and Mark talked to his teacher at the small Jewish day school he attended, and the principal sent out a letter to all of the other first-grade parents. When the big day came, M.C. stood at the front of his class, told them he was born “in-between,” and explained to his classmates that he was a boy.

His parents weren’t there, but Stanton, M.C.’s vice principal at the time, was standing at the back of the classroom. “It was emotional, but he was just so confident,” Stanton said. “He was ready.”

As we were leaving Stanton’s house, Pam walked me back to my car. She giddily scrolled through dozens of photos on her iPhone: M.C., now a 10-year-old, whipping sticks around while sword-fighting his younger brother at a playground; M.C., flashing a toothy grin while proudly wearing Army fatigues he dug up on his own at a neighborhood costume shop.

She and Mark never cared about or believed in gender stereotypes, Pam said. “But then sometimes you just see those stereotypes coming out on their own anyway.”

In many ways, M.C. has so far had it easy. He has been embraced as a boy by his family and his community, many of whom felt the transition was totally natural. But Pam and Mark are firm on one point: If they had been his legal guardians when he was a baby, they would not have chosen surgery. Which is why, in May 2013, they decided to sue those who did.

The Crawfords’ lawsuit is only the latest development in a movement against intersex surgeries that has been building since John Money’s John/Joan case re-emerged in the late 1990s.

These days, new, younger activists are now speaking out on blogs, videos, and social media, denouncing intersex surgeries and proudly asserting their intersex identities. This small but vocal group argues that their surgeries have caused them to feel shame and confusion about their bodies.

Doctors contend that the vast majority of intersex surgeries go well, and that these advocates are a tiny minority. But others say it’s time to start listening to these dissenting voices, no matter how few.

“I hear the same arguments I heard 20 years ago: that these are the disgruntled few,” said Katrina Karkazis, a medical anthropologist at Stanford. “We can’t be 20 years on using the same arguments to dismiss people who are saying things. That’s on this generation of physicians — that’s not on Money.”

Some things have changed over the last two decades. Surgical techniques have improved, for example. And the kids being operated on, who were once kept completely in the dark, now often get counseling services to explain the procedures and their implications. That’s major progress, everyone agrees. Still, the number of surgeries is just as high as it ever was.

“The reality is that in the United States, most [intersex] kids are getting surgery,” said Michael DiSandro, a pediatric urologist at UC San Francisco. “And kind of aggressive surgery.”

At UCSF, a team that includes an endocrinologist, geneticist, surgeon, psychiatrist, and social worker decides how to act in each child’s case. But at many hospitals across the U.S., decisions can be made by just one or two doctors, DiSandro said.

“You have a person with ambiguous genitals, which society does not accept, and as a surgeon you can change it into something that looks completely normal and that society does accept,” DiSandro said. “If you’re not looking at the big picture, and just looking at the surgical aspects of it, then you’re going to be the type of doctor who’s going to do the operations — why wouldn’t you?”

DiSandro says he advocates for reversible and minimally invasive surgeries. In mild cases, such as when a girl is born with an extra-large clitoris, DiSandro opts to leave the tissue alone, as opposed to many other doctors who would operate. In more extreme cases, in which the clitoris of the infant approaches the size of a small penis, he opts for removing only some of the erectile tissue and leaving all the nerves — and, importantly, the internal organs — intact. That leaves the door open for the child to be involved in the decision to live as a boy or a girl later on.

“You can grow up intersex and be perfectly fine and happy.”

But when it comes to the argument put forward by the Crawfords and other advocates — that even minimally invasive surgeries should be stopped altogether unless medically necessary — DiSandro shuts down. “That’s just not the way things work in medicine, and it’s also not the best way to get answers.”

Part of the problem is that scientists still don’t understand much about the underlying biology of intersex conditions, or about the long-term outcomes of surgery.

Eric Vilain, professor of human genetics and pediatrics at UCLA’s David Geffen School of Medicine, is leading a group of scientists and doctors at 10 hospitals across the U.S. to try to bridge the gap between what the medical community knows about gender — which, Vilain admits, is shockingly little — and how it decides to surgically assign it to intersex babies.

If Money argued for the role of nurture in shaping gender, Vilain and his group are vigorously pushing the pendulum in the other direction, trying to pinpoint the biological roots of gender so that surgeons can go into the operating room with more than an educated guess about how their patients will identify as adults.

Advocates fighting against the surgeries, meanwhile, say that this scientific approach misses the point. Getting the gender “right” isn’t the real issue, they say. In their view, scientists are overlooking the unmeasurable amounts of psychological and physical harm that surgery has brought to intersex patients.

Pam, for example, says that she and Mark would have sued regardless of whether M.C. had turned out to be a boy or a girl. “I feel very strongly about that,” she said. “That’s the thing that seems to grab people — ‘They got it wrong!’ But that’s besides the point. Nobody had the right to make that decision.”

But many physicians argue that the alternatives could be even worse.

“Those who advocate for stopping surgery don’t have any evidence that the outcomes of that would be any better than what we’re doing now,” said Barry Kogan, pediatric urologist at Albany Medical College and former president of the Society for Pediatric Urology. “That’s an experiment that’s never been done.”

“We can certainly be criticized for past mistakes,” Kogan added, “but I think this could easily result in just as much psychological trauma and mistakes on the other extreme.”

DiSandro, the surgeon at UCSF, agrees, saying that stopping surgeries altogether would make it impossible for physicians to act in their patients’ best interest. Performing the surgeries early, before babies are old enough to remember it, spares them the pain of having to go through it all later on in life, he said. “Forcing children to be raised with ambiguous genitalia is really tough — that’s almost unethical.”

Only a small handful of studies have looked at the psychological well-being of intersex babies who don’t get surgery. The results don’t point to a clear answer: Some studies find no significant difference in quality of life, compared with people who don’t have intersex conditions. But other studies show disparities in education, employment, and marriage. Intersex conditions are too rare, and the studies too few, so the verdict is still very much out.

But a few people who grew up without surgery have been willing to share their stories publicly.

“I feel compelled to let the public know that you can grow up intersex and be perfectly fine and happy,” said Hida Viloria, the executive director of the U.S. affiliate of Organization Intersex International. It’s not as hard being intersex as everyone assumes it will be — at least that’s my belief.”

Viloria was born in the late 1960s to immigrant parents from Colombia and Venezuela who decided against the surgery that would have removed their baby’s ambiguous genitalia.

Viloria, who uses the pronouns s/he and h/er to acknowledge both h/er intersex identity and h/er history growing up as a woman, first discovered the difference in h/er genitalia — an enlarged clitoris — after a locker room incident at the age of 12. But that was just one of the many differences s/he had to cope with growing up, some of which were much more visible, such as growing up darker-skinned and with parents who had accents.

In high school, Viloria was tomboyish in h/er appearance, but was also a cheerleader and dated boys. Viloria soon realized s/he was attracted to women, and is now happily raising an 8-year-old son with h/er partner.

Viloria acknowledges that h/er experience — like the negative experiences shared by some of those speaking out about their surgeries — is viewed by some in the medical community as an exception to the rule. But with so little formal research, these personal stories carry extra weight.

Given how much we don’t know, some of those who have lived through surgeries argue that the medical community is still gripped by a mentality that favors fixing things over patient choice.

“I’m not speaking as the president of an intersex support group, I’m not speaking as a professor, I’m not even speaking as an intersex individual,” said Georgiann Davis, a sociologist at the University of Nevada, Las Vegas, and president of the Androgen Insensitivity Syndrome-Differences of Sexual Development Support Group. “But why isn’t the move towards monitoring, as opposed to wanting to surgically modify the body?”

“The problem with medicine is that it only listens to medicine — if you express an alternative viewpoint, you’re viewed as an activist,” Karkazis said. “But there’s nothing to change practice like a lawsuit.”

Intersex activists argue that the Crawfords’ case is a crucial step in a fight that’s been raging for decades.

“A lot of my allies in medicine say that a lawsuit will not be productive, and it will not be positive,” said Alice Dreger, a professor of bioethics at Northwestern University and longtime intersex activist. “And I say to them, well, we have failed so far to do what we need to do. At some point, radical actions have to be taken. In this case, that radical action is a lawsuit.”

As a practicing psychiatrist, Pam understands the deep discomfort doctors feel about the law being brought into their clinical practice.

“If there were any other way of getting this across to the medical community than a lawsuit, then I’d be 100% for it,” she said. “But I haven’t been able to see a way to make those kind of changes, and so I’ve had to put aside my own squeamishness about that.”

Initially, the Crawfords filed both federal and state suits. The federal suit, which was dismissed in January, alleged that the MUSC doctors and social services employees had violated the 14th Amendment, which says that no state shall “deprive any person of life, liberty, or property without due process of law.”

The judges decided that they couldn’t rule on the case. Although the defendants may have violated M.C.’s right to procreation, they wrote, “officials are not liable for bad guesses in gray areas; they are liable for transgressing bright lines.”

“This case, as far as I can tell, is the first of its kind in the United States.”

The state case, which will be argued in November, hinges on a different issue: informed consent. A jury will decide whether M.C.’s doctors did enough to convey the risks of surgery, and whether South Carolina’s social services failed to act in M.C.’s best interest while serving as his legal guardians — especially because M.C.’s biological mother was absent from the surgery, and largely absent from his life.

“This case, as far as I can tell, is the first of its kind in the United States,” said Ed Goldman, professor of law and medicine at the University of Michigan, who is not involved in the suit.

The complaint argues that the possible consequences of surgery — loss of sexual function, scarring, loss of male fertility, gender misassignment, and a potential lifetime of psychological distress — were minimized without considering the alternative of doing nothing at all.

And what about the one person whose consent was impossible to give in the first place — baby M.C.?

“If you think of what we call ‘informed consent,’ I think it should really be called ‘informed choice,’” Goldman said. Informed consent in intersex cases, he added, is too often shorthand for doctors getting parents to agree with them in regards to surgery. Parents are afraid, and as a result, the “do nothing” option doesn’t really come up.

Still, Goldman argues that the courts are almost never the right place for medical decisions to be made.

“I don’t like putting what should be a shared decision-making process into an adversarial system,” Goldman said. “Someone wins and someone loses — that’s not the best way to make social policy.”

None of the physicians who spoke to BuzzFeed News would comment on the specifics of this case. But all warned that the lawsuit — if it goes through successfully — could come with negative consequences that affect how patients receive treatment.

“It may very well be that this child has been wronged, and it may very well be that there should be some kind of reparations — I don’t know,” said Vilain. “However, I am just concerned about creating precedent for completely tying the hands of clinicians for treatment of future children.”

Intersex advocates tend to be more optimistic. They hope that the Crawford case, if it succeeds, will spur a new level of acceptance about what it means to be born with atypical genitalia.

“In order to think about changing surgery,” Karkazis said, “it requires that people unseat and question some really deeply held ideas about what makes us male and female in the first place.”

Today M.C. is enjoying life as a boy, and has few insecurities beyond the occasional nervousness about peeing in the stalls in the boys bathroom. Compared with the older intersex individuals I spoke to, many of whom never met another intersex person until they were in their late twenties, M.C. attends a yearly intersex retreat where he has friends and mentors similar to himself.

But Pam and Mark acknowledge that they have only a short window of time before M.C. has to face the harsher realities of his partly female biology. In a few years, there is the distinct possibility that his internal reproductive organs will give M.C. breasts, a period, and all of the other discomforts of female puberty.

When he reaches that point, they say, he’ll start seeing a hormone specialist to decide how and whether to go about blocking female development. He will likely be given hormone therapy for the testosterone his body can no longer produce on its own.

That will also be the point when M.C. will come face-to-face with the medical decisions that were made for him — decisions that his peers, as they enter the sexual phases of their lives, were lucky enough to avoid.

M.C. would have had to deal with these or similar difficulties even if he had never undergone surgery. But to the Crawfords, there’s a crucial difference in the two scenarios: M.C.’s ability to make his own decision.

“We just hate that there were choices made that could have a significant impact on his being able to be a man,” Pam said, her cheery manner hardening into a stern gaze. “We just don’t want people to have to go through what he’s going to face.”

update

The most commonly used technical term for M.C.’s condition is “ovotesticular disorder of sexual development,” although some of his medical records used an alternate term, “ovotesticular disorder of sexual differentiation.” The text has been changed to use the more widely used term.

















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