One day, while Karen Stokes and her 5-year-old daughter were watching TV, a Victoria’s Secret commercial came on. Stokes was unprepared for the reaction.
“My daughter said if she had breasts, she would want to cut them off,” Stokes explained. “I remember thinking, ‘Wow, that’s a drastic thing for this very young child to say.’
“‘Why would you say that?’ I asked.
“‘They just draw so much attention.’”
Years later, it all made sense. In high school, Stokes’ daughter came out as a transgender male — someone who is assigned female at birth but identifies as male — and legally changed names to Chase.
Two years ago, the family moved from Nebraska to St. Louis when Chase’s dad, Jeffrey Stokes, MD, became a professor of pediatrics at the School of Medicine. Chase’s older brother, Carl, also is a third-year medical student here. Chase, now 18, is a sophomore at Northwestern University.
On July 10, following years of comprehensive medical and mental health support, Chase underwent a double mastectomy to align his body with his gender identity. Washington University Transgender Center specialists helped in the transition.
Nationally, the medical field has begun to recognize the needs of this underserved population. School of Medicine doctors say thoughtful medical management and integrated mental health support from an early age can help ensure optimal patient outcomes. Reversible, non-surgical approaches are the first intervention.
The center’s mission: Bring the full range of Washington University’s expertise to the rapidly evolving area of transgender medicine.
Birth of a center
Since opening in August 2017, the Washington University Transgender Center has grown tremendously, with more than 300 patients coming from a multi-state area. It is one of about 40 clinics nationwide serving transgender youth and their families. Most of those clinics are on the east and west coasts.
The transgender center provides a safe and welcoming environment for children and adolescents who identify as a gender different from the sex they were assigned at birth.
Prior to the center’s launch, specialists in pediatric endocrinology and adolescent medicine — including Abby Hollander, MD, Christopher Lewis, MD, and Sarah Garwood, MD — already had been treating a large number of transgender patients and saw a need for more comprehensive care. Ana Maria Arbelaez, MD, chief of the Division of Pediatric Endocrinology and Metabolism, further championed the center, which gained quick support from the Department of Pediatrics and St. Louis Children’s Hospital.
Transgender youth experience increased harassment and discrimination — even within the medical community. They have a higher risk of substance abuse and are nine times more likely to attempt suicide than the general population.
Nationally, many physicians are not equipped to deal with the unique needs of transgender youth. The center provides specialized medical assistance and mental health counseling to youth who may suffer from gender dysphoria, a condition that results when people experience distress related to the mismatch between their biological sex and gender identity. Transgender patients and their family often grapple with a range of emotions and make decisions that will affect well-being throughout their lives.
The center takes a multidisciplinary approach to patient care and brings the shared wisdom of medical peers to a largely uncharted area of practice — one that differs significantly by patient. Weekly team meetings involve specialists from pediatric endocrinology, adolescent medicine, child and adolescent psychiatry, psychology, primary pediatrics and social work.
“We’ve put a lot of thought into the development and implementation of the center to make sure we are not missing any key pieces,” Arbelaez said. “We are the only multidisciplinary program for transgender youth in a 250-mile radius. And we take a very comprehensive approach to patients that is unique.”
Treating transgender patients
Treating transgender adolescents remains controversial. However, growing numbers of U.S. teens are rejecting “boy” or “girl” gender identities and identifying themselves with nontraditional terms, such as transgender or gender-fluid. Some gender specialists estimate that 1 in 500 children is gender non-conforming or transgender. According to federal data, about 1.4 million U.S. adults now identify as transgender, doubling the previous decade’s estimates.
Though still in its infancy, brain imaging research and other studies are starting to point toward a biological basis for gender dysphoria. Some scientists hypothesize that, in utero, sexual differentiation of the genitals occurs separately from sexual differentiation of the brain. Thus, the body and mind can veer in different directions.
Garwood, center co-director and an associate professor of pediatrics and adolescent medicine, said society’s struggle to accept transgender people often stems from a failure to understand that gender identity may not line up with biological sex.
“This is something that happens,” Garwood said. “Identity is something that is probably fixed in your brain, just as you’re born with other characteristics. We can’t stop it from happening, but we can change the way we include people in our culture in a more compassionate way.”
Many people also are uncomfortable with the idea that gender can be fluid, added Lewis, center director. “Every other aspect of humanity such as IQ, cancer risk, height or skin tone are on a spectrum. So why wouldn’t gender identity and sexual orientation be as well?”
Adolescents often disclose their gender identity during their teenage years. There is some evidence that social and medical transition is a protective factor against suicide, Garwood said.
The center’s goal is not to sway anyone to move from one gender identity to another. It is to ensure that these marginalized patients get equal access to informed health care. The providers listen, ask and answer questions and offer information and support.
“My job is not to tell people what they should or shouldn’t do — everyone’s journey is their own to make,” said Lewis, also an instructor in the Division of Pediatric Endocrinology and Metabolism. “My job is to assist them on the path that they deem the most appropriate for themselves and educate them to make informed decisions.”
Such access to LGBTQIA (lesbian, gay, bisexual, transgender, queer, intersex, asexual) health-care resources did not exist for Lewis, who grew up as a gay male in Texas.
Later, as a pediatric resident at Washington University, he completed an advocacy rotation led by Garwood. She suggested Lewis attend a meeting of TransParent, a support group for parents of transgender children, to see if it might be a good way for other residents to learn about transgender health in the community.
The parents at the meeting said they did not know a single provider who could answer their many questions on gender identity and transition. They also were fearful about issues facing their children, such as bullying and discrimination. Others were experiencing feelings of loss: the child they had known since birth had to go away, so that a new one could emerge.
“He (Lewis) went to the meeting and had this epiphany that set him on a course for his career,” Garwood said.
Lewis already was planning to specialize in pediatric endocrinology — a medical field concerned with hormones. Because many transgender health issues revolve around hormones, he decided to become competent in transgender health care. He attended conferences, read publications and sought out his eventual mentor Stephen Rosenthal, MD, an expert in transgender health at the University of California, San Francisco (UCSF).
“It’s been really exciting for me to see what Dr. Lewis has accomplished at a relatively junior point in his career,” said Rosenthal, the medical director of the Child and Adolescent Gender Center at UCSF and past president of the Pediatric Endocrine Society. Rosenthal helped write the 2017 Endocrine Society transgender health guidelines, which are followed internationally by transgender centers, including the one at Washington University.
The Human Rights Campaign, the largest civil rights organization working to achieve equality for LGBTQIA Americans, honored Lewis with the 2017 Equality Award for his work with the transgender community.
Beginning the journey
The center sees new patients ranging in age from 3 to 21 years old, who present with concerns related to gender. The initial visit begins with a thorough work-up, including the patient’s medical history and gender “journey” (when gender identity was established, experience of coming out and social transitioning, family and school support, mental health concerns and other key factors).
While some patients, like Chase, come to the center for help with medical treatment, others seek mental health support. Garwood treats patients with anxiety, depression, eating disorders and other teen-related concerns.
Her interest in the transgender population grew as she worked closely with patients engaging in self-harming behaviors. “They were depressed, they struggled with eating disorders, they even attempted suicide, in some cases, and were really in a lot of distress,” Garwood said. “Ultimately, what I learned after working with them was that at the core of the distress was gender dysphoria.
“I saw hope in that when their authentic gender identity was accepted and disclosed, they were able to heal.”
The clinic staff is continuing to expand. Now, the most complicated mental health and trauma diagnoses are referred to team newcomer Andrea Giedinghagen, MD, an attending physician in the Eliot Division of Child & Adolescent Psychiatry.
For children who are in puberty and are struggling to determine their gender identity, Lewis may prescribe puberty blockers. These hormones delay puberty and suppress unwanted irreversible secondary sexual characteristics, such as breasts, Adam’s apple development and voice deepening.
Blockers, which also are given to children who experience early puberty, are fully reversible and once stopped, allow puberty to resume normally. “Blockers give these children the chance to continue to process their gender identity with their parents and mental health providers and decide options for future lifestyle,” Lewis said.
The center also administers gender-affirming hormones, such as testosterone and estrogen, that help a person’s physical body match their gender identity. Lewis talks extensively with parents, who often have concerns about the effects and risks of hormone therapy. Among other services, the center refers to surgical subspecialists, reproductive endocrinologists, mental health providers, speech therapists and community resources.
Some patients, like Chase, ultimately elect to have surgical interventions.
Growing up as a girl with two older brothers, Chase dressed in hand-me-downs, played mostly with boys, hated dresses and often cut his hair short. When puberty hit, he noticed boys and girls tended to go their separate ways. “I didn’t really understand why this was a big deal. I’d hung out with boys my whole life,” he said.
Chase had his first appointment with Lewis in February 2017. “I think the center is a great resource for trans kids to have,” he said. “And I personally think Dr. Lewis is one of the nicest people I’ve ever interacted with. He has the ability to really put people at ease.”
Once established as Lewis’ patient, Chase began taking testosterone. He decided to have a double mastectomy so that others’ perceptions would match his self-perception.
Transgender care guidelines require letters from therapists before a patient may undergo surgery. Lewis said none of his patients have regretted undergoing hormone therapy or surgery, although some have regretted not moving forward with such interventions.
Because of the surgery, Chase no longer binds his chest, a common way transgender males hide their breasts. The practice can make it hard to breathe and may distort the ribs.
“Top” surgeries (chest reconstruction) are performed by Kamlesh Patel, MD, associate professor of surgery, and Alison Snyder-Warwick, MD, assistant professor of plastic and reconstructive surgery. Snyder-Warwick and Gino Vricella, MD, assistant professor of urologic surgery, perform “bottom” surgeries (genital reconstruction) in adult patients.
“My patients have been happy to have the top surgery,” said Patel, who performed Chase’s surgery. “They no longer have to hide who they are.”
Support is key
Both Garwood and Lewis noted that family support is the number one factor that can improve quality of life for transgender people. Additionally, the medical community plays a key role.
Clinicians across all fields can expect to treat transgender patients in increasing numbers. As a doctor and a parent of a trans teen, Chase’s father, Jeffrey Stokes, has a unique perspective.
“This is not stuff that you’re taught in medical school,” he said. Stokes treats children with asthma, allergies and pulmonary conditions and said, in his field, a patient’s gender doesn’t matter as much. But he added that it is important that all patients feel comfortable. This may include using respectful language, such as patients’ preferred names and pronouns, and changing intake forms to include Sexual Orientation/Gender Identity, or SO/GI, data.
Lewis and Garwood now lead educational outreach in clinical and community settings. At her daughter’s school, Garwood organized a Washington University physician panel to answer questions about transgender identity and health issues when parents objected to adding those topics to sex education classes.
Lewis, Garwood and others, including Ina Amarillo, PhD, assistant professor of pathology and immunology, are interested in doing research to inform transgender care. They are building a database to collect anonymized patient data and are planning to study outcomes, such as the effects of hormone use on growth and bone health, cardiovascular disease, cancer risk, depression
The providers meet with local transgender community members to make sure they have a voice in any planned research projects. As Arbelaez said: “We’re really here for the community and to provide the best patient care possible.”
An adult transgender center will open at the Center for Advanced Medicine by the end of 2018, Arbelaez said, which could ease the burden on the current center. The new center will enable the teams to look at more long-term patient outcomes and improve the continuum of care.
A label assigned at birth based on medical factors, including hormones, chromosomes and genitalia.
A person’s internal sense of being male, female, neither of these, both or other gender(s).
Physical manifestation of one’s gender identity through clothing, hairstyle, voice, body shape, etc.
Physical, spiritual and emotional attraction to another person.
Androgynous: Partly masculine and partly feminine in appearance.
Bi/pansexual: A person who experiences sexual and/or emotional attraction to more than one gender.
Cisgender/cis: A person who identifies as their sex assigned at birth.
Gender binary: The classification of sex and gender into two distinct, opposite and disconnected forms of masculine and feminine.
Gender dysphoria: Anxiety and/or discomfort regarding one’s sex assigned at birth. This term replaced the previously used medical term “gender identity disorder.”
Gender-fluid: A person whose gender identity is not fixed.
Gender non-binary: A person whose gender identity falls outside of the traditional gender binary structure.
Gender non-conforming: A person whose behavior or appearance does not conform to conventional expectations of masculinity and femininity.
Intersex: A person who is born with an ambiguous biological sex, who may have both male and female characteristics.
Queer: Once considered a derogatory term, now it is often used to represent individuals who identify outside of categories of sexual and gender identity.
Transgender/trans: A person whose gender identity differs from their sex assigned at birth.
Transsexual: An older medical term for people who have changed or seek to change their bodies through medical interventions such as hormones and/or surgeries.
Addressing differences of sex development
More than 150 medical conditions can cause individuals to differ from the traditional definition of a male or female. These can range from difference in sex chromosomes and ambiguous genitalia to hormonal or other genetic changes that are not typical of either a male or female. These conditions, known as intersex or differences of sex development (DSD), may lead to medical professionals delaying gender assignment at birth. Best practices allow such children to choose their own gender at their own pace with the assistance of mental health and other providers. Pediatric endocrinologist Christopher Lewis, MD, leads Washington University’s interdisciplinary DSD clinic, which also houses providers from fields such as urology, gynecology, clinical genetics and psychiatry. For more information, visit dsd.wustl.edu.
Published in the Autumn 2018 issue