Intersex: When a baby isn’t quite boy or girl

“Breathe and push,” Eric Lohman encouraged his wife, Stephani, as she squeezed his hand and bore down. After seven hours of labour, they were both eager to meet their baby, a daughter they had already named Rosalie—Rosie for short—after an ultrasound indicated they were having a girl. A few more pushes and Rosie made her grand entrance, wriggling and wailing and perfectly pink. A nurse held up the alert newborn for her parents to see. Their baby girl appeared to be a baby boy.

“I told you ultrasounds could be wrong,” Stephani said to Eric, giving his arm a playful swat.

As Eric cut the umbilical cord, he got a closer look at his newborn. Rosie didn’t look like their son, Silas, had at birth. And once the cord was cut, the nurse didn’t place Rosie on Stephani’s chest, but whisked the baby to the examination area across the room. The atmosphere quickly went from celebratory to subdued. Stephani sensed something was wrong, but, numb from the epidural, she couldn’t sit up to see what was going on. “Why aren’t they bringing me my baby?” she asked.

A nurse said they were waiting for the paediatrician on call as there may be an irregularity. After what seemed like an eternity but was really only 10 minutes, the paediatrician approached Stephani’s bedside and sheepishly explained to her and Eric that sometimes when a baby is born, it’s hard to tell if it’s a boy or a girl.

Rosie was intersex.

What does it mean to be intersex?

Intersex, or differences of sexual development (DSD), is an umbrella term that refers to people born with variations in sex characteristics that don’t fit into the typical binary definition of boy or girl. Stephani, who was studying nursing, and Eric, who was working on his PhD in media studies, had heard of intersex conditions, but many parents who find themselves in a similar situation are shocked to realize that babies can be born with anything other than a penis or vagina. Yet being intersex is almost as common as having red hair, affecting nearly two percent of the population.

These differences in sexual development may be in chromosomes, internal organs or genitals. Some intersex traits aren’t discovered until a person hits puberty or has difficulty conceiving, while others are obvious at birth. Sometimes the differences are relatively subtle—a girl may have an enlarged clitoris or a boy’s urethra opening may be on the underside of his penis, rather than the tip. In other cases, children may have a mix of male and female genitalia or have genitalia that is in between male and female. About one in 2,000 babies are born with visibly atypical genitals.

“When babies are forming, there’s a very complex series of things that has to happen for them to be born with absolutely typical genitals,” says Daniel Metzger, a paediatric endocrinologist at BC Children’s Hospital in Vancouver. “It’s like a big chain reaction and anywhere it breaks can disrupt things downstream.”

There are more than a dozen intersex conditions—the majority are genetic while some are caused by atypical cell division. In many cases, hormones affect a child’s development in utero. For instance, a woman may take male hormones to treat severe endometriosis before knowing she’s pregnant, or produce them through an ovarian tumour. Intersex conditions also occur when babies produce high levels of male hormones or are unable to respond to them.

Rosie was born with congenital adrenal hyperplasia (CAH), which caused her body to overproduce male hormones while in utero and develop male characteristics, and underproduce other hormones needed to fight illness and regulate salt and water in the body. Rosie has a more serious form of the condition called salt-wasting CAH, which can be life-threatening. After birth, Rosie’s blood sugar and weight plummeted, and she spent 19 days in the NICU.

Assigning a sex to an intersex child

Most intersex advocates and doctors agree that every child should be assigned a sex soon after birth, which simply involves calling a child a girl or a boy. “Unfortunately, we still live in a society where a child who is not assigned a sex will face harmful discrimination and stigma as a result,” says Kimberly Zieselman, an intersex woman and executive director of interACT, an advocacy organization for intersex youth.

Arriving at a decision can be a painstaking process for parents. They have to take into account not only what their child’s genitals look like but also how their brain and body will develop.

There’s research on how people with certain conditions identify on the gender spectrum, which can help guide decision-making. For example, 95 percent of genetic females with CAH who were raised as girls identify as female. Still, intersex children are more likely than other children to feel that their sex assignment doesn’t match their gender identity. Depending on the condition, the risk of choosing the wrong sex at birth runs as high as 60 percent. Zieselman recommends parents make an educated guess and remain open to the possibility that their child may identify differently as they age.

However, since the 1960s, doctors have been performing surgeries on babies to reinforce sex assignments. In rare cases, immediate surgeries are required out of medical necessity. For example, a child may not have a free-flowing urinary opening. But, in many cases, surgery is performed purely to make a child’s appearance match their assigned sex—a highly controversial practice that advocacy and human rights organizations are working hard to stop.

“We’re trying to get away from this unnecessary urgency that’s created when intersex babies are born,” Zieselman says. “Before you start feminizing or masculinizing their genitals, wait and see how your child adjusts, get a better grip on what their gender identity is and let them decide what to do with their own body. Surgery is a huge risk because you don’t know what any child’s gender identity is going to be, intersex or not.”

What happens at the hospital when you have an intersex baby

On their third day at the London Health Sciences Centre in Ontario, while Rosie was still in the NICU, Eric and Stephani Lohman had their first DSD team meeting. They walked into a room where about 30 healthcare professionals were sitting around a table and lining the walls. The room came to a hush, and Eric and Stephani tentatively took the two open seats.

Giving families of intersex babies access to a DSD team is considered a best practice and happens at hospitals across Canada. The interdisciplinary teams consist of doctors and nurses from a variety of specialties, social workers, psychologists, and ethicists when necessary. Meetings with families are intended to get everyone together to discuss a child’s diagnosis and treatment options, as well as support for the family, in an open, collaborative manner. But it doesn’t always work that way. Teams may not be cohesive, the views of the practitioners and parents may be polar opposites, and emotions and egos can run high.

One after another, the experts shared their opinions on Rosie’s condition. The urologist recommended two surgeries for Rosie before she was six months old: one to create a vaginal opening and another to reduce the size of her clitoris. The social worker piped in and advised the couple not to tell their other children, two of whom were teenagers, that Rosie was intersex.

Stephani and Eric had spent the past two days researching Rosie’s condition between skin-to-skin snuggle sessions with their new baby. They knew surgery wasn’t necessary for their daughter, and they believed that she should decide for herself if she wants to have irreversible elective procedures. Moreover, Eric had read harrowing accounts of the lasting harms of both surgery and secrecy.

No one asked the Lohmans about their values, but when they shared their views, the urologist doubled down. He said Rosie could get urinary tract infections and wouldn’t be able to menstruate. Eric shot back that menstruating is a concern for a 13-year-old, not a three-day-old. (And he later found a study in the Journal of Pediatric Endocrinology and Metabolism showing that girls with CAH are no more likely to get UTIs, and among girls who had undergone surgery, all UTIs occurred after the procedures.)

At another meeting two days later, the urologist again pushed for surgery. At one point, he turned his laptop toward the Lohmans. On the screen was a photo of a baby girl’s genitals fresh out of surgery. Eric was incredulous.

“We felt completely blindsided and bullied by the urologist’s approach,” he says. “There was a lot of pressure, a lot of pushback and a lot of fear that was completely unfounded. Everyone else just sat there looking at their shoelaces and left us completely out to dry.”

The urologist at London Health Sciences Centre declined an interview request, but a spokesperson said the hospital follows guidelines issued by the American Academy of Pediatrics in 2006, which state that “it is generally felt that surgery that is carried out for cosmetic reasons in the first year of life relieves parental distress and improves attachment between the child and the parents.” However, as the paper points out, there’s a lack of evidence for this assumption.

The Canadian Paediatric Society doesn’t have a position statement on the care of intersex children, and hospitals have different practices.

A study published last year in the American Journal of Medical Genetics surveyed 22 US hospitals with DSD teams and found that only 11 percent discuss with parents and put in writing whether a procedure is medically necessary or elective, and whether or not it’s reversible. Just over half of hospitals impose a “thinking period” between discussion of treatment and decision-making. Less than a quarter of the hospitals record procedures and outcomes.

Not only is there little data on the rates of these surgeries and their outcomes, there’s also a dearth of research on how children fare psychologically with or without surgery. In a report published last year, three former US surgeons general wrote that “there is insufficient evidence that growing up with atypical genitalia leads to psychosocial distress,” and “while there is little evidence that cosmetic infant genitoplasty is necessary to reduce psychological damage, evidence does show that the surgery itself can cause severe and irreversible physical harm and emotional distress.”

Essentially, irreversible cosmetic procedures are being performed on babies without sound science backing them up.

The ethics of elective surgery for intersex babies

Wilfrid Laurier University sociologist Morgan Holmes knows too well the pain caused by nonconsensual elective surgery. She was three years old when her nanny noticed she had a large clitoris and alerted her single father. Years of intrusive genital exams followed, culminating in a clitoral recession at SickKids in Toronto when she was seven. The procedure resulted in “a pleasing cosmetic effect,” according to her medical file.

“It should be fairly obvious that removing body parts because we don’t like how they look is odious,” says Holmes, who is an active member of the advocacy community and dedicates a large part of her academic work to intersex issues. She says that while the harms of surgery have not been well documented in medical journals, they’ve been painstakingly detailed in the testimonies of intersex people. Last year, interACT and Human Rights Watch released a 160-page report brimming with devastating stories.

“We’ve been filled with self-loathing that just doesn’t go away,” Holmes says of the intersex community. The physical harms include reduced sexual sensation, pain, scars and the removal of desired body parts. The emotional harms can include feelings of shame, mental health issues and parental estrangement. “Parents are not the owner of the future of the child,” Holmes says. “They are the custodians of the child for a temporary period of time, and their job is to protect them from being undone.”

In 1997, female genital mutilation was added to the Criminal Code of Canada under aggravated assault, but a caveat allows for surgical procedures for the sole purpose of creating a “normal sexual appearance.”  Holmes is now working with Egale Canada, an organization that defends the rights of LGBTQI2S people, to change the law and to educate the public and legislators on this issue.

Last year, a South Carolina hospital settled a lawsuit with a family whose adopted son received feminizing surgery when he was 16 months old and in the custody of the state. Advocates call the case precedent setting. In 2015, Malta became the first country to ban surgery on intersex babies. But some healthcare providers in Canada worry that a similar move here could put some children at risk.

For instance, SickKids in Toronto treats babies referred from other countries where they’re at risk of being rejected—or worse, killed—for being intersex. Barbara Neilson, a social worker in the urology program and co-ordinator of the DSD team at SickKids, counsels families that surgery is rarely necessary right away, but some insist upon it. “For some families, every diaper change is really distressing,” she says. “We can work with them to become more accepting, but we can’t change their thinking.”

Neilson has been working with intersex people for the past 30 years and has met adults who are angry with their parents’ decisions whether they chose surgery or not; what they have in common is that no one talked to them about it. “It was often shrouded in mystery. There was shame attached to it,” she says.

Neilson suggests caregivers start telling their children about their condition when they’re babies. They won’t understand, of course, but parents can practice what they’re going to say and get more comfortable. She also advises families to record the conversations they have with healthcare professionals so they can review the information before making decisions and so their children can listen when they’re older and understand how those decisions were made. Connecting with other intersex people and their families is also important, she says. SickKids runs support groups and there are a number of online communities.

“The kids who do the best are the ones who have supportive families who are open with them,” she says. “It’s important for parents to know that this is a small part of their child’s life. It seems huge at first, but with support they will get through it.”

Raising an intersex child

Eric and Stephani have been talking to Rosie about her condition for years, but she’s only starting to understand that her body is different than the other kids’ in her kindergarten class. Her parents frame it in the context that all bodies are different—people are different heights and weights and have different hair and skin colours—and her intersex condition is simply one of those differences that’s just more unique. Rosie doesn’t seem concerned—she’s more interested in building Lego houses, putting on makeup and singing her heart out with her karaoke machine. No one else seems bothered either; Rosie has been to pool parties and participated in toilet training at preschool. People have been universally accepting.

While the Lohmans refused surgery, they plan to support Rosie in making her own decisions when she’s old enough. They’re also dedicated to supporting other families; Eric joined the board at interACT and this year the Lohmans will release a memoire called Raising Rosie.

Rosie’s name was inspired by Rosie the Riveter, an icon of female empowerment, and she’s living up to it. “She has a confidence about her body and her condition that continues to surprise us,” Eric says. “Our goal is to raise an empowered intersex child, and anyone who meets Rosie would say that she’s well on her way.”

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