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Inside Lurie Children's gender/sex program, Part 1 of 3
The Gender Development Clinic
by Gretchen Rachel Blickensderfer
2014-04-30

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Christie and Rob are the proud parents of Elexa. The family lives in Kalamazoo, Mich. When she was around 16 months old, Christie and Rob noticed that Elexa preferred the colors pink and purple. She also liked to play dress up and found joy in all things sparkly. Last summer—at the age of six— she told her parents that she wanted to marry a man and "be a bride."

About 180 miles away in Aurora, Ill., 14-year-old Nicole is the daughter of Veronica and George Caballero. Nicole always envied her older sister Alicia. They were best friends and played together constantly, imitating characters they saw on TV shows like Hannah Montana. Nicole was in her element during those games. When she was six, she told her sister a secret. Nicole wished and prayed that she would wake up in a girl's body.

Donna and her husband David live 24 minutes away from the Caballeros in Lisle, Ill. Their child Ryan is seven years old and has an older brother. At the age of two—during role-playing games together—Ryan always wanted to be the girl. When Donna brought out some of her childhood Barbie dolls that she kept in a closet for those times her nieces would visit, Ryan wouldn't let her put them away.

All three families are participants at Lurie Children's Hospital's Gender & Sex Development Program. It provides help for kids in need of Gender Development Services ( usually from age 4 to 24 ) and those children born with Disorders of Sex Development ( DSD )—formerly known as intersex—who can be as young as newborns and as old as 24.

Within the Gender Development Clinic, Elexa, Nicole, Ryan and their parents have found an oasis of medical consultation and mental health assistance from some of the finest pediatric and psychological service providers in the country. There are safe-space playgroups where the children can interact outside of their natal gender and—for their parents—the opportunity to meet, learn from one another and find commonalities and support.

The clinic exists as a guide for children and their families. It does not provide definitive answers to every question they have about gender; rather it makes information available to help them discover those answers for themselves. That information also helps a family and the child determine the healthiest path to go down. Should the families request it, the program offers medical intervention for the children through courses of puberty-delaying medication and then cross-sex hormones all under the exacting care of an endocrinologist. Meanwhile, the clinic conducts extensive research into gender non-conforming youth from pediatric age through adolescence.

In 2010, the National Center for Transgender Equality and the National Gay and Lesbian Task Force released a study culled from a 70-question survey of more than 7,000 transgender participants. "Access to healthcare is a fundamental human right that is regularly denied to transgender and gender non-conforming people," the study began. It added that they "frequently experience discrimination when accessing healthcare, from disrespect and harassment to violence and outright denial of service."

Among its key findings: Twenty-eight percent postponed medical care when sick or injured due to discrimination, 19 percent were refused service completely, 28 percent were subjected to harassment in medical settings, 2 percent were victims of violence in doctor's offices, and 50 percent had to teach their own medical providers about transgender care.

A full quarter of respondents said they misused drugs or alcohol as coping mechanisms against discrimination, while 41 percent said that they had attempted suicide during their lifetimes.

Had an impassioned pediatrician named Rob Garofalo not become, as he termed it—"a dog with a bone" about establishing a Gender & Sex Development program in Chicago—Elexa, Nicole and Ryan might have become a tragic statistic as they grew up. Garofalo and his team at Lurie thus view the Gender & Sex Development Program as an essential and sometimes lifesaving resource that will help a gender non-conforming child or adolescent and their parents find a pathway through society rather than being beaten down by its hopelessly narrow view of the gender binary—little boys wear blue and play with tanks while little girls wear pink and play with dolls.

"When you come out of the womb, we try to put people in boxes," Garofalo said. "It's a blue box or a pink box. You either do boy things or you do girl things. We live in this world that is very dichotomous in its gender orientation. Gender is not always that easily defined. For some people it will always be fluid and somewhere in the middle."

Garofalo, a gay man, is the division head of Adolescent Medicine at Lurie and an Associate Professor of Pediatrics at Northwestern University. He co-directs the Gender & Sex Development Program—an idea he nurtured from a career spent working with adolescent transgender women who were either exposed to or at risk of acquiring HIV. "It's always been difficult for me to see the transgender community viewed only within the public health prism of HIV," he said. "I always felt like it was a very narrow perspective."

Garofalo read a 2011 paper authored by Dr. Norman P. Spack, the co-director of the Disorders of Sexual Development and Gender Management Service ( GeMS ) clinic in Boston. Garofalo sent the paper to a local philanthropist arguing that Chicago was in need of a clinic of its own.

"I said that the transgender community was a rare population that had been both underserved and understudied," Garofalo recalled. "I mean—even within our hospital which has been hugely supportive—this wasn't an issue or a population that was really understood. There had to be an education process for Lurie to get why this was important."

It was a process Garofalo took on with vehemence and a passion that was not to be swayed under any circumstances. "This meant something to me," he said. "I was going to make this happen by hook or by crook."

Ultimately, his determination, advocacy and argument won over the hospital and the philanthropist who gave Garofalo the funds needed for a three-year start-up plan. Garofalo had been working with a number of families before he secured the funding but—by the summer of 2013—the clinic was well underway and operating under a gender-affirming model. Today there are 80 active participants and their families who have found the program either through their own research or via referrals. They are partnered with a multi-disciplinary team of specialists who can provide them with a complete picture and guide to everything the transgender, gender queer, non-conforming, questioning or DSD child or adolescent needs. They include two urologists, three pediatricians, two endocrinologists, a pediatric psychologist, a child and adolescent psychiatrist, a clinical psychologist, an ethicist and two surgical specialists.

Although they are based at Lurie facilities in different parts of the city, the entire team remains in constant communication and meets one day a week for academic research. Every other Tuesday, they gather for a multi-disciplinary clinic to focus on individual cases and assess a participants needs.

Dr. Lisa Simons is a pediatrician and specialist in adolescent medicine. She is a fairly new addition to the team having completed a fellowship in Adolescent Medicine at Children's Hospital of Los Angeles and training at the facility's Center for Transyouth Health and Development.

"During our meetings we talk about new patients who are coming to the clinic and take the time to review everyone involved to make sure that they're getting the lab testing that they need. We also make sure they aren't late in their visits," Simons said. "The meetings provide an opportunity to discuss situations or patients that may be more challenging. It's a completely collaborative treatment plan, so the more information we have, the better."

The first point of contact for any family interested in the Gender & Sex Development Program is usually a phone call from the parents to Program Coordinator Jennifer Leininger. She ensures an open dialogue between the program and its participants. Among her many tasks, she coordinates all appointments with the team members, manages staff meetings, organizes the youth play-sessions and parent group interactions and even goes into the schools of participants to educate staff and administrators on transgender and gender non-conforming issues. Leininger used to work with the Broadway Youth Center as well as with Garofalo at Lurie as a research and administrative assistant. Today, she said she views her job as an extraordinary opportunity to leverage an idealism and experience that began in college.

"Every call I get is different," Leininger said. "Sometimes people want to hear more about us before they start sharing their story. Others call with a huge urgency to share what they're going through. Families are worried that—when they call—they're going to be pigeonholed or put on a certain path. We're not trying to pathologize anybody. We just want to be sure that we are offering all the support we can and give the families and children what they need."

Leininger makes a first appointment with a prospective family. "The first half hour they will fill out a mental health assessment so our psychologists can get a better picture of who they will be seeing in clinic and what their needs are," she said. Leininger then helps determine who the family will be meeting with—usually one of the psychologists and one of the attending physicians. She runs through a timeline with the family, outlines community and family support resources and asks a lot of questions all while maintaining a relaxed, warm and safe atmosphere.

"We need to determine if a family is looking for puberty blockers, cross-sex hormones, social support, information or a combination of all of those things," Leininger said. "Typically they're just looking for a team who can help them navigate an extremely complicated world, especially in the way that our society is structured in terms of gender."

A meeting with a psychologist helps young participants and their parents explore their gender identity in a structured way. "Mental health care has been deemphasized and made the bogeyman around gender," Garofalo said. "We really try to encourage young people to access mental healthcare appropriately. Even if it's not to just talk about their gender identity, I think the process of transitioning brings up a lot of other issues. We don't make it mandatory but we reintroduce it as part of the holistic care approach that we have for these kids."

The mental-health goal is not to prove that the child is transgender or gender non-conforming, but to address both the child's and the family's needs and feelings. Head Child and Adolescent Psychiatrist Scott Leibowitz, MD, said he views himself as a detective who seeks and draws out a child's strengths. He trained in New York and eventually became a fellow at Boston Children's Hospital during the evolution of GeMS program. Garofalo recruited Leibowitz, who joined the team in October 2013.

Leibowitz said he mainly sees children coming into the Gender Development Clinic. His participants cross the developmental spectrum—from ages as young as four through prepubescent, adolescents, mid-adolescents and young adults. He stated he believes that the transgender population is reaching a crossroads similar to one successfully overcome by the LGB community in 1973 "when homosexuality was depathologized. Now we're at a point where it's recognized that being transgender is not a pathology. As a field, we're starting to understand and study the needs of the population. There are aspects of gender identity that have been dormant in a given child or adolescent. My team is here to help the child explore who they are in a healthy way and affirm their identity no matter what external pressures might exist."

His office cabinets contain toys like Barbie dolls, wands and puppets for the prepubescent children. Older kids can engage in art projects and board games like Connect Four in order to help them relax. "If kids can turn their feelings into a game, it's a really helpful way of getting them to open up," Leibowitz said.

In order to help break gender binaries, Leibowitz also has a selection of magnetic books that allow the child to dress a girl in boy's clothes and vice versa. An 8-year-old trans girl created a "dress diary"—an astonishing series of sketches that equated a dress designed by the girl to the way she was feeling. "I recognized that this kid had difficulties opening up," Leibowitz noted. "The minute you bring it to an area that the kid feels good and confident in—like drawing a dress—that's how you engage a kid in treatment and that's how you get them to break down their own boundaries about themselves and their identities."

Leibowitz said that the Gender & Sex Development Program is not purely clinical. "We're not just serving the people we see face-to-face but through innovation, research and collaborating with clinics on a national and international level, we're able to promote scientific understanding."

His colleague, psychologist Dr. Marco Hidalgo, Ph.D., plays a hybrid role in the program—therapy as well as assessment and research. He said he sees parent's reactions, particularly in the youngest age group, ranging from curiosity as to what is happening with their child to nervousness. "They're noticing gender non-conformity and that is alarming to them," he said. "Or their friends and family or spiritual communities are making it tough for them."

Hidalgo said that the gender non-conformity or gender variance he sees in children is not simply a phase and that part of his job is to understand how the family comprehends gender roles and expectations. "For a family that is quite rigid in their expectations, their threshold of what's considered non-conforming is going to be much lower than those who are a little more flexible," he explained. "As best as possible, we try to encourage them to learn more about gender variance and—from some of the research—what often happens to children who aren't supported."

However, he acknowledged that the term "gender non-conforming" is a label that can feel very both clinical and deterministic. "It can feel very much like a child is not meeting society's expectations," Hidalgo said. "So the balance is acknowledging that these expectations in society make it tough for people who don't fit within them. If we don't acknowledge that, then we can't understand how resilient these young people are in having to overcome these challenges"

He added that a child's gender expression can happen at ages as young as 2. "I've heard a very young natal male say 'I feel like I'm a girl' and some who have quite a bit more conviction and say 'I am a little girl. I'm not who my parents think I am.'"

Part of Hidalgo's job is to encourage empathy from those parents. "I try to help a parent to feel what it's like to be in the shoes of their child," he said. "What I'll often use as an example is something that we all experience when we put on a piece of clothing and it doesn't feel right. Or it doesn't compliment who we are or our body just doesn't feel like it wants to be wearing that clothing today. It's uncomfortable and we change it."

Within even the most affirming of parents who come to the clinic there is an element of grief at a perceived loss of the boy or girl they knew. "They've said to me 'we were careful, we chose our child's name because it meant something and that name is now gone'," Hidalgo recalled. "There is a part of the family history that has changed."

Hidalgo said that the program's providers often work with families to understand that—although there is a gender binary in western culture that can't be ignored—there is also a great deal of diversity such as kids who are non-binary or gender queer. "The flavor of fear that I've picked up so far from parents are those who are not ignorant to the kinds of discrimination that people who do not fit within a nice box of gender expression go through," he said. "They want to be supportive but they fear for their child's safety."

"We have parents who disagree about what should be done," Garofalo added. "That happens a lot. They are at odds as how to care for their children. The mom may be very supportive of a child's transition but the father wants us to do nothing. We've gotten as far as one parent threatening to sue us if we medically intervene. I find that really sad for the child and for the family. I mean I really feel for these parents. There are these right wing people whose opinions come from a place that isn't particularly good, but most of these parents—whether they're affirming or not affirming—they're hearts are in the right place."

Although society has grown in small steps to accept and provide more resources for transgender people, there is still an extremely long way to go. Hidalgo's cases are living proof. "Unfortunately, for as much wonderful resilience and amazing strength that families and young people bring to the clinic, there's also a lot of adversity," he said. "A lot of adolescents I see have histories of self injury, suicidality, depression and anxiety. I would say—from what we know in research—that early child experiences that were non-affirming and rejected by family members, therapists or spiritual leaders have taken a toll in some cases."

If a child is having trouble in school either with fellow students or administrators, the Gender Development Clinic engages its partnership with the Illinois Safe Schools Alliance. They and Leininger provide a professional development program for the school in question that stresses the importance of supporting trans and gender non-conforming children. "It can be challenging for people who have more rigid ideas of gender," Leininger said. "We'll talk about how gender as a social construct has shifted over the years."

Simons added that one of the biggest jobs for the team is to explain to parents, families, and schools the meaning and differences found in gender expression, gender roles and gender identity. "Gender expression and gender roles are certainly culturally based and impacted by society," she said. "But gender identity—how one feels on the inside— is not impacted by society. It's internal and a part of who that person is."

"For adults it's intertwined," Leininger explained. "People worry when we talk about gender identity that we're also going to be talking about sexual orientation and that's really not the case."

Leininger encourages the school to adopt recommendations that include trying not to segregate by gender, the use of preferred gender pronouns, treating the child as their gender identity dictates and having inclusive dress codes. "Schools that bring us in have either been approached by a parent or see a need," she said. "So these are all voluntary professional development sessions. At the end of the day, I'm not looking to change political beliefs or even minds, but I am trying to make sure that everyone is on the same page that we're all here to support children."

Dr. Travis Gayles, Ph.D., a pediatrician and research fellow in adolescent medicine, shares the same office with Simons at the Gender Development Clinic. Gayles says there have been some positive outcomes for participants he has seen.

"I can think of one person who was fortunate to be on puberty blockers," he said. "But it wasn't until he started testosterone that he felt like 'this is real.' Being able to be there for his first shot was pretty awesome. I watched this usually quiet child get very emotional. To watch the parents see the change in their children in terms of a feeling of confidence and becoming who they truly are, to see that excitement was amazing."

In some cases, older children and adolescents want to see medical intervention begin right away. However—before puberty blockers or cross sex hormones are administered—baseline lab work and a bone scan are completed in order to get a sense of where the child is in terms of pubertal development and hormone levels. "We use that time to have a very frank conversation with the child that hormones don't complete a transition," Gayles said. "We emphasize the other aspects of a transition such as different gender pronouns, a change of name and presenting at school. We get kids to take their dreams about their future and integrate that with realistic expectations about their new life."

Simons said that she hopes the clinic will eventually grow to include sexual reassignment surgery ( SRS ) services. "Certainly it's something that some adolescents ask about," she said. "So we'd always prefer not to have to refer patients to California or Philadelphia. It would be much nicer if we could keep them within this area and have close follow up here. But we need to make sure that we get people who can provide good and safe results."

Gayles is currently studying the affects of victimization and violence of young transgender women via a quantitative survey and a qualitative interview. "One of the consistent themes I've seen so far is that trans kids who seem to have more familial support were still exposed to bullying and victimization but weren't as bothered by it," he noted.

"Without any treatment or support, the risk of drug use, sexual risk behaviors, suicidality and depression is much higher," Simons said.

"It's very easy to marginalize a group at a community level," Gayles added. "It's a very different thing when you have an institution like Lurie that is providing support. It takes the issue mainstream and forces the rest of society to take notice."

"Visibility needs to be there before you can hope to change stigma on a community or national level," Simons agreed. "I met a family whose 16-year-old had recently disclosed gender identity. The parents were in shock and they said something that I hear a lot: 'why can't my child just be gay?' They were supportive parents who had seen so much positive change in society towards being gay but had not seen anything happening in the trans world."

One of Gayles' most rewarding memories at the clinic so far was to watch the evolution of the play and social groups on offer to kids and parents. "The first time we had a family group, the parents and the kids were in the same room," he remembered. "Then at one point, one of the kids was like 'we should go to the other room and have our space.' They all got up and left and it was beautiful to watch because some of those kids had never had an opportunity to meet anyone like them. They had always been 'otherized'. It was nice to see the sense of relief on their faces to not have to be 'the other.' They could be in a room with someone just like them."

During the play and social groups, mental health providers are on call but generally remain out of the space in an aim to keep the groups from becoming overly therapeutic. They are completely organic and allow families and kids to take ownership of informally supporting each other. Future goals include adding a pycho-educational component, particularly for the parents. The mental health team would talk to them about warning signs of behavioral or emotional distress to look for during developmental periods—such as when attending middle school.

Many young transgender people who are not as fortunate—who remain isolated or unaware of the services provided by the clinic—will often purchase hormones online and engage in courses of self-medication that are life-threatening. Dr. Courtney Finlayson, MD, is one of two endocrinologists for the Gender & Sex Development Program. Another former staff member of the GeMS clinic, she has been on Garofalo's team since its inception. All the puberty blockers and cross sex hormones she administers are carefully controlled and their effects on participants are rigorously monitored.

"One of the main things to be concerned about with excessive testosterone use is the risk of polycythemia which is an increased hemoglobin level," Finlayson said. "This puts someone at a greater risk for stroke. We can also see liver problems and a higher risk of diabetes. For estrogen, one of our main concerns is a risk of blood clots. If someone has a family history of blood clots we would be particularly concerned about that. It can also cause liver damage, increase cholesterol and can lead to tumors in the pituitary gland."

On average, a girl begins puberty at the age of 10, and a boy between 11 and 12. If a child and family decide to go ahead with puberty blockers, Finlayson administers one of two medications—leuprolide acetate or histrelin. The former is an intramuscular injection given once a month or every three months. Histrelin is an implant placed under the skin of the upper arm that releases medication over the course of a year. "They stop the pituitary gland in the brain from producing the hormones LH and FSH that tell either the testicles or the ovaries to produce testosterone and estrogen," Finlayson explained. "So basically you stop puberty from the top; from the brain."

Although these blockers could give an uncertain prepubescent child added time to consider whether they want to receive cross-sex hormones, there is still a limit on how long they can be used to delay the process. "At some point, any child will need exposure to sex steroids to accrue proper bone density," Finlayson said. "If the medicines are given too long, the child is at risk for osteoporosis. One of my concerns about using the puberty blockers for too long is the impact on bone health."

Neither drug has been approved in the United States for use with the transgender population, thus families must understand it is an off-label use of the medications. This has already led to problems with insurance companies. "It is only approved for children who've started puberty early," Finlayson explained. "These are very expensive medications. The cost is in the $15,000-30,000 per year range. This is prohibitive for most people if they have to pay out of pocket which is a huge problem."

Finlayson may have found an answer in a form of the histrelin implant called Vantas. "It is approved for use in men with advanced prostate cancer," she said. "It delivers a little less medication but the purpose is still the same, it works the same way but is substantially cheaper."

The clinic has used philanthropic funds to help families cover the cost of medications when insurance companies have denied them. "We're working on developing ways to support folks who are uninsured or underinsured," Leininger said. "We have funds set aside especially for that. We don't want to turn anyone away."

Meanwhile, Finlayson said she thinks the march to FDA approval for use of these medications on transgender children will be tricky but some progress is being made. While some members of the general public argue against such intervention as an interference in nature, Finlayson said she sees it differently. "I think it's very hard for anybody who has not met a child who is gender non-conforming to conceive the anguish and the conviction that the child has in knowing they have been born into the wrong body," she said. "For me the most compelling experience was seeing and meeting the children. It's not fair for them to be forced to feel miserable enough to inflict self injuries, or attempt suicide. This is a population that needs our help."

In its mission to provide that help, one of the primary aims of the Gender & Sex Development Program is medical research.

"When people ask me, how common this is?" Leibowitz said. "The real answer is we don't really know. There aren't good studies. So a clinic like this gives us more information about the scope of how common gender non-conforming behavior is."

"I really hope that, five years from now, we're a really good educational resource for other places around the country so that they too can do this work," Garofalo said. "I say this all the time to families that I hope—before I die—I can sit in front of them and say 'this is what you should do, because we've done all these studies and accumulated all this evidence that suggests that this is the right path.' We don't have that now. We are forging those paths with families but we need to begin collecting data in terms of beginning to fill the research gaps."

Garofalo has not focused such research on determining a cause for gender non-conformity. "I can see that being misappropriated and used against the community," he said. "Our initial research is really looking at appropriate treatment paradigms for children and parents such as the role of mental health counseling and the support systems families need to provide the best environment they can for their children. Our outcomes research is focused on getting some information on the various interventions for these young people."

Meanwhile, Garofalo continues to build his team in order to meet a growing demand. "I didn't anticipate that we would grow as fast as we did," he admitted. "I was a little overwhelmed by how much of a need there was out there. I feel like what our program has tried to do the most of in the past year is to meet the demand in a way that is comprehensive and thoughtful. We're going to keep adding and changing because the community will continue to have different needs from us. We are still learning but it's been a real honor to do this work."

Lurie is the location of one of the three days of the May 2-5 LGBTQ Homeless Youth Summit that Windy City Times is hosting. See chicagosummit.lgbthomelessness.com/ for details. The event will be live tweeted on WindyCityTimes1 and other Twitter accounts with the hashtag #DreamIt2014 .


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