Raising an intersex child: 'This is your body. ... There's nothing to be ashamed of'

 edition.cnn.com  4/15/2019 3:30:55 AM  2

The doctors in the Ontario hospital were silent. Eric knew that the situation was more serious than a mixup.

"I sort of looked around at that moment, and I saw what I would describe as panic on all of the medical staff's faces," Eric said.

They had expected their baby, Rosie, to be a girl, but her parents saw what seemed to be a penis. Eric remembered learning when he was getting his doctorate about babies born with genitalia that wasn't typically male or female. He realized right away that Rosie was like those babies.

"I wanted the baby to be put on my chest right away, because I just had her, and I worked really hard for that moment, and they didn't," Stephani said, recalling that day in 2012. "And I was scared."

The doctors covered Rosie with a blanket and took her across the room for what seemed like a long time, Eric said. When they returned, they offered what they knew: Rosie had atypical genitalia, and more tests were needed to determine whether she was genetically a girl or a boy and if she had a serious medical condition, Eric said the doctors told them.

"It basically went from very celebratory, very exciting, to very scary," Eric said.

Eric Lohman holds Rosie in the hospital in August 2012.

The next few days were filled with extensive tests and examinations until the doctors were finally able to make a diagnosis. Rosie had two X chromosomes, and so was considered to be female, they said, but she had salt-wasting congenital adrenal hyperplasia, a severe form of a condition called CAH for short. People with CAH are missing an enzyme that the adrenal glands need to produce cortisol. Rosie's body is unable to retain enough sodium.

The adrenal glands also produce the initial ingredients of sex hormones, so when the brain gets signals that cortisol levels are low, it demands that the adrenal glands work harder. That leads to a higher production of sex hormone ingredients, which results in an excess of male hormones. Those hormones are what cause the formation of atypical genitalia in fetuses with two X chromosomes while they're in utero.

Rosie's condition is classified as a DSD, or differences or disorders of sex development, by many physicians. Some patients and parents of patients -- including Eric and Stephani -- dislike this classification. They prefer the term intersex.

Many conditions under the DSD/intersex umbrella could result in a variety of different physical sex characteristics on individuals, such as an enlarged clitoris or a micropenis.

Atypical genitalia does not always occur in patients with CAH, but when it does, doctors sometimes encourage plastic surgery.

Eric remembered learning about these operations as a student, and he was skeptical.

Stephani stayed in the hospital with Rosie, who was still being monitored, and began to research the surgeries. At home, Eric did the same. They familiarized themselves with the list of potential long-term risks, such as chronic pain, an inability to orgasm or eventual rejection of gender assignment. If the doctors proposed surgery, Eric wanted to say no. Stephani didn't even anticipate that it would come up.

"My idea, because I was very naive about it, was that they would never recommend anything that wasn't necessary right now," Stephani said. "Like, they wouldn't put a tiny baby under the knife for no reason. Can you imagine a world in which they're just doing cosmetic surgeries on babies? I couldn't even imagine that existed."

An 'easy' fix

The surgical approach to CAH and other DSD/intersex conditions began in the 1960s, when doctors found ways to perform surgeries that reduced some of parents' anxieties about their babies. The surgeries were intended to help patients conform more with the mainstream characteristics of one sex or the other. But sometimes, the outcomes of these surgeries didn't align with patients' eventual gender identities.

Over the years, some who had these surgeries grew to feel a misalignment between their sex and their gender, or felt that surgery had left them mutilated because their genitals lacked sexual sensation. This led to a wave of activism referred to as the intersex rights movement, with people speaking out and protesting medically unnecessary surgeries on children.

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Today, these surgeries are starting to be viewed more as cosmetic procedures instead of emergency treatments, but they are still performed.

There's legislative pushback from the intersex community too, most recently seen through a California bill, SB 201.

The bill would prohibit doctors from performing surgeries on minors with atypical genitalia unless the procedures are determined to be "medically necessary" or the child can provide informed consent beforehand. It is sponsored by Democratic Sen. Scott Wiener of San Francisco.

The California Medical Association has formally opposed the bill and wrote a letter of opposition to the state Senate Committee on Business, Professions, and Economic Development.

"The bill makes an exception for any procedure or treatment that is deemed medically necessary, which is defined in such a way that cannot properly address the complexity of DSD cases and potentially endangers the physical and emotional health and future of the patient," the letter stated.

In 2017, Human Rights Watch released a report on infant genital surgeries that are performed on babies with atypical genitalia, declaring it cruel and unnecessary. It provided detailed testimonials from individuals who had the surgeries and felt violated and damaged.

About 1 in 2,000 babies is born with genitalia different enough that doctors might recommend surgery, according to the report.

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Tiger Devore, a Las Vegas-based clinical psychologist and advocate for people considered to be sexually different, said the rate of surgeries hasn't really changed since the 1960s. A 2016 study in the Journal of Pediatric Urology found that of 37 babies with what researchers called "moderate-to-severe genital atypia" who were born after 2011, 35 were subject to genital surgery.

Devore was born in 1958 with hypospadias, a condition in which the urinary opening is on the underside of the penis instead of the tip. He had over 25 surgeries, many of them when he was a child. He describes them as painful and unnecessary.

"There are people who have grown up having these surgeries very early on in life. They're making it very clear to the medical society that these surgeries don't work, we don't like the outcomes, this shouldn't have been done to us as children," Devore said. "It's our genitalia, and we want to grow up with our own genitalia. Not the genitalia that our doctors thought was right, not the genitalia our parents thought was right. It's our body."

Surgeries are typically performed to treat the anxiety of the parents, which is not fair to the infant, he said.

The notion is that kids will have a better life because their genitals will look normal, but often that's not the case, he said.

"If you do plastic surgery on the genitalia, you do not magically get normal male or female genitalia. We get intersex genitalia that has had plastic surgery done to it," he said.

The parents' decision to consent rests heavily on their education on the subject, he said.

"If they take a moment to do a little research, it can make a huge difference for the future of the child," he said.

Feeling the pressure

Three days after Rosie was born, Eric and Stephani were invited to a meeting with specialists to discuss steps. They recall walking into a room with more than a dozen medical staff: pediatric gynecologists, geneticists, pediatric urologists, endocrinologists and a social worker.

"It was probably the most intimidating room I've ever been in," Eric said.

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Rosie's parents said a pediatric urologist presented them with two options only: They could reduce the size of Rosie's clitoris and create a vaginal canal, or solely do the vaginal canal surgery.

He recommended that Rosie have both procedures done simultaneously at about 6 months old, and preferably not much later than that. The argument was that the younger Rosie was, the faster she would heal, and she wouldn't have to experience looking physically different from other children.

After thorough research, Rosie's parents knew that they didn't want either procedure.

To their dismay, not having any surgery was never presented to them as a possibility, Eric said. And when he brought it up, the doctor said that was a choice he wouldn't recommend, due to the risk that Rosie might eventually experience psychological trauma from not looking like other girls.

The rest of the staff stayed silent, Stephani said.

"It would have been nice to think that we had one ally in there, but we didn't," Stephani said.

The doctor's sentiment was that if Rosie looked normal, she would feel better about herself. Eric and Stephani felt there was nothing wrong with appearing different, and if there was going to be a surgery, Rosie deserved a choice in the matter. They remained adamant about not consenting to the surgeries.

Meanwhile, the couple was advised by the social worker to be careful when explaining Rosie's condition to other people, including her older brother and sister.

Rosie at home in the summer of 2013.

David Sandberg, a psychologist at University of Michigan who provides clinical services to children with DSD/intersex conditions and their families, said his first step when dealing with families who have a newborn with one of these conditions is to help them figure out the best way to share the information with people they trust.

"The story doesn't have to be all the details. But there should be nothing that would be considered a lie in retrospect," said Sandberg, who was not involved in Rosie's care. "It could be a partial story. It could be less technical. But it has to be based in truth. Because once you go down the road of telling a non-truth, then it's very difficult to extricate yourself from that."

The Lohmans continued to feel pressured by their pediatric urologist to consider surgery, even as Rosie approached her first birthday. After putting their foot down and saying they wouldn't consent, the same pediatric urologist waved them away, Eric said, as if to say they would be back within a few years. (The pediatric urologist declined to comment for this story.)

It's been years since that appointment, and they still haven't returned.

According to the American Academy of Pediatrics, its guidelines about atypical genitalia are being reviewed.

"The American Academy of Pediatrics agrees it's important that a child's medical team and parents engage in open, transparent conversations so that parents fully understand their child's condition and the risks and benefits of any proposed treatment, as well as alternatives, such as delaying surgery," the organization said in a statement.

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Dr. Veronica Gomez-Lobo, director of pediatric and adolescent gynecology at Children's National Medical Center in Washington, said she agrees with the American Academy of Pediatrics' statement and the further goals it states of "helping children to have a happy and healthy life."

Gomez-Lobo has worked with many families at the PROUD Clinic, which provides specialized diagnostic, evaluation and treatment services for children with complex diseases, including those that result in atypical genitalia. When an infant is born with one of these conditions, the first priority at the clinic is allowing parents to form a relationship with their child, she said.

"We don't even need to see these children until they've bonded with the parents, and so we don't even see them for an evaluation until about a month after they're born," she said.

For patients with CAH, clinic workers first make sure that all of the medical needs are being addressed and treated, Gomez-Lobo said. After that is taken care of, they inform parents of the benefits and risks of genital surgeries, and they now mention the Human Rights Watch report, she said.

"We don't know whether making a clitoris smaller has any benefit," she said. "Whether that's going to make the child grow up with a better self-image or something like that, nobody has evaluated that. But there is some literature that supports that maybe doing clitoral surgery may reduce the sensation, and it depends on how it's done and a lot of different reasons."

Out in the open

After Rosie's diagnosis, the Lohmans spent a lot of time at home and were open about Rosie's condition only to family.

"Pretty soon, I started to feel like that was wrong," Stephani said.

When they began to feel nervous about hiring babysitters who would have to change Rosie's diapers, they decided to share the secret.

"I was like, 'this is ridiculous. This is just making it shameful. Sometimes, I don't feel like we're doing her a favor,' " Stephani said. "We had the thought that we are contributing to this culture of shame. We're perpetuating what exactly it is we're trying to avoid."

Rosie at home in 2014.

Rosie was 18 months old when they stopped hiding her condition and were frank about it with friends and others outside the family, Stephani said. At age 4, Rosie was featured in the documentary "Gender Revolution: A Journey with Katie Couric," now available on Netflix.

The family now lives in Milwaukee. Eric is on the board of directors of interACT, an organization dedicated to raising the visibility of intersex children and fighting for laws protecting intersex youth against surgeries.

Recently, they brought Rosie to a protest at Lurie Children's Hospital in Chicago, where they called on the facility to end the practice of medically unnecessary infant genital surgeries. In July, Eric and Stephani released a book about their experience raising an intersex child, "Raising Rosie."

And in August, Eric flew to California to testify before the state's Committee on Health in favor of a resolution that condemned unnecessary surgery on children with intersex conditions. Weeks later, the resolution passed, making California the first state to denounce such surgeries. The resolution was introduced by Wiener, who sponsored the bill that would prohibit some of these surgeries.

Outing Rosie as intersex to the public has been the most troubling decision for the Lohmans, Eric said. Eric and Stephani have written a letter for Rosie to read when she is old enough, explaining how they came to the decision to speak out about her condition. They hope she'll understand. Until then, they are focused on making her as comfortable with her body as possible. As she gets older, they plan to prepare her for how to deal with addressing her condition in front of her peers and choosing when to be private.

"If the time comes and we're like, 'OK, now she's gonna have a sleepover,' we'll say, 'well, we want you to know that this is your body, and you should feel comfortable talking about it, and you don't have to show anybody your body, but there's nothing to be ashamed of,' " Eric said.

Rosie's family, and their new puppy, now live in Milwaukee.

The risks of surgery on a child with differences of sexual development are well-known, the University of Michigan's Sandberg said, but the risks of avoiding surgery -- which is still rare -- are not clear. When he faces a family who wants to operate on their newborn with atypical genitalia or a family who is adamantly against it, he makes sure to warn them of the risks that could result from either decision. Because there's very little published evidence on how the children who don't have surgery do growing up, all he can do is speculate.

"Being different in some way doesn't necessarily hurt you, but it is not an advantage," Sandberg said. "And so one has to know something about the factors that make a child more vulnerable for being rejected or neglected by peers. And those would be things that in a gradual, developmentally appropriate way that I would tell some families. But I would sort of telegraph that early on. If I have any value at all to the family, it's engaging them in a discussion that continues over time, as the child gets older. And then, over time, engaging the child in these conversations."

On the other hand, Devore, the Las Vegas clinical psychologist, said he thinks there should be only one approach toward helping parents who have a child with one of these conditions.

"We feel strongly that people who are ob-gyns and other people who deliver babies need to be taught to say, 'you have given birth to a healthy intersex child. Not just a male child. Not just a female child. Or a child that has problems. You have given birth to a healthy intersex child,' " he said. " 'Someday, that child may choose to have surgery or not. But the hospital will provide genetic counseling, neurologic counseling and psychological counseling so that your family can face this challenge in a healthy way and so that your child can be given the guidance to understand their difference.' "

Devore expects younger generations, as well as younger physicians, to be more open-minded about intersex conditions and variability of expression. The changing environment can be seen on college campuses, in the media and on Facebook, he said.

Intersex is a viable identity that shouldn't be seen as unhealthy, he said. But it is just as important for individuals born with atypical genitalia to have the right to not be defined by that, either.

"If people have a sense of themselves as male or have a sense of themselves as female, no matter what their genitals look like, they get to identify that way," he said. "And that's the most basic point that we could have emphasized. It is the right of the individual to determine how they choose to identify. It is not the right of the parent. It is not the right of the physician or surgeon."

Nothing out of the ordinary

Rosie is now 6 years old and has never had genital surgery. She has big green eyes and blonde hair that she prefers be kept short. Dresses are among her favorite things to wear. Her parents describe her as "intrepid" and "brave."

"She wants a mohawk," Eric said. "We try to tell her that having a mohawk is unpractical in Wisconsin because you have to wear a winter hat. But she wants short hair, so that's what she has."

Silas, left, and Rosie, right, in 2017.

"Rosie's awesome. She's a firecracker," Stephani said.

They have told Rosie that her body is different from other people's but that many people have differences in their bodies. "And that's OK," Eric said.

If Rosie ever expressed a desire to have a clitoral reduction, Eric said, they would begin the process by having her speak to a therapist, an intersex person who had surgery and an intersex person who has not had surgery.

"If that happens in a year, then we'll start it in a year, and if it happens when she's 16, then we'll do it then," he said.

They would urge her to wait until she's a teen, at least, and until she has experienced sexual pleasure, because of the procedure's potential effect on sexual sensations.

Rosie's been taking medication for CAH since she was a baby. She now takes three pills a day to keep her cortisol and electrolyte levels balanced. Pills swallowed at 7:30 a.m., 3:30 p.m. and 10:30 p.m. prevent her from going into adrenal crisis.

Rosie's health is stable, and she's learning to care for her condition independently.

With this medical routine, Rosie's health is stabilized. She's beginning to learn how to take care of her condition independently and carries around a rescue kit in case she goes into adrenal crisis. But her parents are still concerned about what the future holds. Sicknesses and hospitalizations are inevitable with her condition, Eric said, and he's nervous about the quality of her health care when she's older -- as well as the possibility of schools and jobs being unforgiving about her having to take time off.

Even though Rosie has been raised as a girl, it's important to her parents to refer to her as intersex and to encourage gender fluidity. In other words, they don't confine her gender expression to that of a boy or a girl.

Since Rosie identifies as a girl, her parents check off "female" under the sex category when filling out forms. She's in first grade this year and has developed a group of core friends. She uses the girls' bathroom and has yet to be confronted by other students about her body. But they are confident that with her type of personality, she'll either not care or laugh about it, if anyone were to point out her differences.

Her teachers are aware of her condition and have been compassionate, he said. Parents in their community have also been accepting.

"As of right now, she's very stable, and we have a very supportive network," Eric said. "It's almost as if nobody cares about the intersex part of her."

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