Mac and Katy Schafer of Raleigh say they don’t know what they would have done without the help they found at Duke. Their daughter Hunter, who transitioned from male to female as a teenager, needed hormone treatments, and without Duke there would have been nowhere else to go.
Deanna Adkins, the endocrinologist who treated Hunter, recently founded a new center for gender-related disorders at Duke Children’s Hospital and Health Center. The Center for Child and Adolescent Gender Care, which opened in July, is the first of its kind in North Carolina and one of only a handful in the Southeast.
Adkins said more people are realizing that it’s possible to treat gender dysphoria, a condition in which a person’s emotional and psychological identity as male or female doesn’t match his or her biological sex. For kids like Hunter, getting treatment early can mean a huge improvement in their quality of life, she said.
The Schafers say the support of Adkins and her colleagues made all the difference. “In a very tangible way, it changed our journey and changed our lives.” Mac Schafer said.
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I want to make darn sure that every child has the chance to have their needs addressed.
Dr. Jonathan Routh, urology surgeon at Duke’s Center for Child and Adolescent Gender Care
The highly publicized transformation of former Olympic decathlete Bruce Jenner into Caitlyn Jenner earlier this year has put a spotlight on transgender issues like never before. But it’s a topic that still makes a lot of people uncomfortable, particularly when it comes to children and teens.
“Any time that you mention children and gender in the same sentence people get a funny look on their face,” said Dr. Jonathan Routh, the new gender center’s urology surgeon.
The gender care center takes Duke specialists like Routh who might have treated some aspect of sex development and gender care and puts them under one roof, where they can work together as a team. Routh performs surgery for sexual disorders such as ambiguous genitalia as early as infancy, but transgender patients aren’t considered candidates for sex-change surgery until they are 18 years old, Adkins said.
Still, it is best for transgender kids to receive treatment earlier rather than later, Adkins said. Hormone blockers, used to postpone puberty, work best if the patient is pre-pubescent. The blockers are used as a way to buy time.
‘Almost more deadly’
Routh said the anguish that comes from growing into a body they don’t identify with can push young transgender people to suicide. According to the Suicide Prevention Resource Center, 45 percent of young transgender people had seriously considered killing themselves.
“This is almost more deadly than anything else I treat,” Adkins said.
Hormone blockers are reversible. Adkins won’t prescribe permanent steroids until her patients are 16, she said, and only after careful counseling and consideration.
Hunter Schafer, now 16, began seeing a counselor for her gender dysphoria when she was 14. By then, she felt she already knew she needed hormone blockers, and as puberty approached, her body was heading in a direction she wasn’t comfortable with. When she was referred to Adkins, who prescribed the blockers, Hunter says she felt “an enormous weight off my shoulders.”
“It gave me time to think about who I am, what I identify as and how that should reflect biologically,” she said.
Starting the center
Adkins said she began treating gender disorders almost by accident. When she first got referrals for gender disorders, she referred patients to centers in Toronto and Boston, the closest specialty centers she was aware of.
Eventually, a colleague got in touch with Adkins and offered to teach her how to treat gender disorders if she would help a family in need of care for their child in the Raleigh area. Thinking she would take on only a few occasional clients, Adkins agreed.
When her referrals for gender disorders became regular, Adkins realized there was a need for a dedicated gender center. The team is comprised of more than a dozen people, including specialists in urology, psychology, social work, pediatric surgery and endocrinology.
Until the opening of Duke’s gender center last month, there were few other options for kids with gender disorders and their parents, Routh said. He described kids with gender conditions as a population not getting the care they deserve.
“I want to make darn sure that every child has the chance to have their needs addressed,” Routh said.
The experts at Duke put puberty on hold for Hunter Schafer, allowing the family breathing room. Hunter Schafer never reached a crisis, as many kids in her position do. Mac Schafer said increased resources for gender disorders could mean huge differences for kids and their families.
“Their existence would bring hope to more kids who question their gender identity,” he said.
The Schafer family spoke about their experience at the Trinity School in New York City in mid-April at the invitation of the school’s chaplain, an old family friend. Hunter Schafer said she feels the need to contribute to the nationwide dialogue on transgender issues.
She recently started her junior year of high school at the UNC School of the Arts in Winston-Salem. As for her transition, she’s taking a low dose of estrogen and expects the dose to increase soon.
Hunter Schafer is still in the midst of figuring out how she wants to live the rest of her life. She has considered surgery, but still isn’t sure she needs it. In her speech at the Trinity School, she described her journey in discovering her true identity as peeling back the layers of an onion.
“I’m certainly not at the center of that onion,” she said.
More on transgenderism
There have been very few efforts to count the number of transgender people living in the United States. Gary J. Gates at the University of California at Los Angeles, who studies the demographic and economic characteristics of the LGBT population, combed various surveys and studies in 2011 and estimated that there were about 700,000 transgender people in the United States, or about .3 percent of the population.
To reach The Center for Child and Adolescent Gender Care at Duke children’s hospital, call 919-684-8225.