Transgender kids: A family quest, a medical quandary
Posted October 15
SEATTLE — Skyler Pfeil ran a finger across his midsection, underneath the breasts that the 15-year-old considers a deformity and hopes soon will be removed. He was tracing where the surgeon told him the scar will be.
"I already expected to have scarring," said the transgender boy from Kenmore. He is concentrating on the positive, like how he will no longer need the painfully tight undershirt known as a "binder" to flatten his double D-sized breasts.
"You know when you get a really, really bad bruise," he said, describing how it feels to wear one for prolonged periods. "But it's all over my upper region, and it's like someone's constantly pressing on that bruise."
Skyler's mother started crying. "It seems so unfair," she said.
The scarring, Corina Pfeil said, could have been minimized had Skyler gotten treatment earlier — specifically, "puberty blockers," medications taken during adolescence to suppress breast development and other hormonal changes. If Skyler's breasts hadn't grown so big, there would be less now to remove.
Even now, on the cusp of a change she and her son have been pushing for, she can't help but reflect on the hurdles they faced since a 13-year-old Skyler began saying, tentatively at first and then more firmly, that the female body he inhabited just felt wrong.
Once, transgender care was the province of adults, reported the Seattle Times (http://bit.ly/2d8UCIL). Now, more and more kids are seeking treatment, hundreds of them locally. They're encountering a medical system that is spottily prepared, lacking much research and still thinking through what kind of treatment is appropriate at what ages.
"It gets really murky in the pediatric population," said Dr. Alexander Gougoutas, a UW Medicine surgeon the Pfeils approached at one point. "It draws out all sorts of questions about informed consent. Are they truly able to make these decisions? Are their minds going to change? Are their parents influencing their decisions?"
It's not just doctors wrestling with these concerns. Aidan Key, founder and executive director of Gender Diversity, a Seattle group that supports transgender people, said everyone — whether a teacher, janitor or bus driver — is asking "either silently or aloud" these collective societal questions.
"Most people have no frame of reference for this," he said, and that includes parents. A child's declaration of identifying with another gender "tends to hit any family like a ton of bricks."
Some parents can't accept it. Others wonder whether their kids are experimenting or pushing boundaries. Many, though, wholeheartedly get on board. And to them, the medical response can seem inadequate.
"The pendulum shifted so drastically," said Laura Edwards-Leeper, a psychologist at Oregon's Pacific University who studied with Dutch pioneers in the field and helped develop one of the first U.S. programs for transgender kids in Boston in 2007.
At that time, helping kids transition in sometimes irreversible ways was considered controversial. Now, families are pressing for earlier interventions and fewer hoops to jump through.
"Health providers are scrambling," said the psychologist, who also noted the "huge increase" of transgender kids seeking treatment in the last decade.
Seattle Children's opened a clinic for transgender and gender-nonconforming people ages 8 to 21, offering puberty blockers and hormones that allow those who take them to develop characteristics of the desired gender. The hospital's Gender Clinic will not yet offer surgery but will refer patients to outside providers.
"Finally," said Corina Pfeil, who had looked to Seattle Children's to help Skyler transition, beginning when he was around 14. The hospital offered limited transgender treatment at that time, much of it reserved for kids 16 and older.
Group Health Cooperative established a Gender Health Program last year that serves children as well as adults. In September, the cooperative dropped the age minimum for gender-affirming "top surgery" from 18 to 16. The cooperative had watched families go elsewhere and pay out-of-pocket for the surgery, so desperate were they to have it, said Dr. Gina Sucato, the program's associate director.
Still, Group Health's minimum age would still be too old for Skyler, who even by 14 was highly distressed. "I wasn't at the point where I could live with myself," he said.
"The wrong puberty"
Skyler smiled as he remembered Barbie dolls from his childhood. Or rather Barbie doll parts. "I would make awesome amalgamations, gross sculptures," he said, talking at a Starbucks near his home.
Born with the name Sara, he also liked to play with dragons and erector sets. He caught snakes and frogs.
He didn't fit in much with girls and he hated dresses, which he cut up. His mom didn't think too much about it then.
The sparse research available at the time, as now, encouraged caution. One study by Dutch leaders in the field found that many of their patients 12 and under who seemed uneasy with their gender felt differently over time.
But those with the most extreme feelings tended to see them persist into the late teens and 20s, with puberty often serving as a decisive time, according to that and a follow-up study.
Skyler's feelings continued. By 13, he was exploring a gender-neutral identity, neither male nor female, and using the pronoun "they."
YouTube and TV made him aware of the concepts, he said. "I wanted to try it out," he recalled. Just a simple word change took a weight off his shoulders. "It felt right, or at least close to right."
It drove his mom crazy. "Decide already!" she said she thought.
A couple of years later, he did. He sorted through his identity with a friend he met at a cosplay convention, where costumed participants role play in sometimes gender-bending ways. And he turned again to YouTube, where he learned about transgender health and products.
"I felt more comfortable, the more information I got," Skyler recalled.
It's a familiar pattern in a generation whose awareness has been raised by transgender internet and media celebrities such as Caitlyn Jenner. "Oh wow, this explains what I've been struggling with," young people may say to themselves, said the psychologist, Edwards-Leeper.
A report in August by the Williams Institute, a think tank at UCLA, estimates that a much higher percentage of teens identify as transgender (between 1.3 and 3.2) than adults (0.6).
Being transgender can mean different things for different people. Some, especially younger kids, are at least temporarily content to "socially transition" by changing their pronouns and aspects of their appearance like clothing and hair length. Others want full-on surgical transformation. Still others opt for breast surgery but not genital surgery, or hormones without surgery.
Whatever their choices, young people are speaking with confidence, said Key, of Gender Diversity.
Now 52, Key transitioned in his early 30s. He said he was surprised when the first kids, along with their families, started showing up at a big annual conference put on by his group.
"Did I know anybody who was transgender when I was growing up? No," he said.
Gender Diversity now runs a half-dozen support groups from Bellingham to Tacoma for gender-questioning kids and their loved ones. Some 650 families have attended over the past decade, he said.
The Polyclinic's Dr. Kevin Hatfield, who by his account has one of the largest transgender and gender-questioning clienteles on the West Coast, estimated that he sees about 275 kids. The youngest is 4.
Born a boy, the child started saying "I'm a girl" as soon as she could talk, Hatfield said. At that age, you don't treat medically, said the family physician. Instead, he counsels parents to "accept your kid" and "come back and see me when puberty is closer."
That's when it's time for a discussion about puberty blockers. "The beauty of using a blocker is that you won't have any of the wrong puberty," Hatfield said.
"There are kids who go to bed every night, raise the sheets, look down and pray they won't look like that in the morning," elaborated Dr. Norman Spack, co-founder and director emeritus of the trailblazing Gender Management Service at Boston Children's Hospital.
Hatfield, Spack and other medical providers say puberty blockers buy kids time to figure out who they are before launching into more serious interventions.
How old is old enough?
Skyler thought he knew who he was when he went to see a hospital endocrinologist in early 2015. He had been seeing a Seattle Children's psychologist for almost three years, dealing not only with issues around his gender but depression and anxiety, according to documentation provided by Skyler's mother.
At 14, he already was quite developed. Still, he wanted to ask the hormone specialist about puberty blockers. "We were exploring every single option," Skyler said.
The doctor said she would not prescribe the medication, according to Skyler and his mom. "It was awful," Skyler said. "It's like you're finally going to get something you've always needed . but then the door shuts."
The hospital was in the middle of recalibrating its approach to transgender care. At one time, its endocrinology department prescribed puberty blockers to young adolescents. Then, several years ago, the department stopped seeing new transgender patients.
Many kids "suddenly had no one to see," recalled Hatfield, who ended up taking a number of them as patients.
The hospital, in a statement, said the shift was due to the departure of a couple of staffers "well-versed in treating transgender patients," and the need to build "a multidisciplinary program that was thoughtfully designed and adequately resourced."
That's where Dr. David Breland came in. The adolescent-medicine doctor arrived at Children's in 2009, moved by what he saw at a San Francisco clinic that treated transgender teens.
He wanted to offer the same kind of care here, but needed to get up to speed. He dug into the professional literature and began developing a plan for the clinic that just opened, which has Breland as its medical director.
While plans simmered, Breland worked with the patients who came to him. He left the decision about puberty blockers to others at the hospital but would prescribe the "cross-sex hormones" that allow someone to develop characteristics of another gender.
He said he generally starts that big step at "around 16."
That mirrors influential guidelines issued by the Endocrine Society right around the time Breland came to Seattle. The guidelines also recommended deferring surgery until at least 18.
Regarding puberty blockers, the guidelines didn't provide a specific age but suggested giving the medication when children show signs of development (normally between 9 and 13).
Of all the guidelines, those around puberty blockers are the least debated. Still, some blanch at treating kids so young. "The medical community should proceed with extreme caution," asserted a paper by a psychiatrist and an epidemiologist released in September in The New Atlantis, a journal that describes itself as liking to "stir things up."
Puberty blockers have been used for years with very young children to stop early development, but some have raised concerns about bone health when used during adolescence.
Generally, though, they are considered safe and, in Hatfield's words, "100 percent reversible." If they want to, kids could develop according to their birth gender when they stop taking the medication.
The bigger debate is when to start hormones and perform surgery.
With surgery, the consequences are obvious: once breasts are removed, they're gone.
With hormones, whether testosterone or estrogen, there are known and unknown effects. Known is that many of the changes are permanent, like facial hair and a lower voice for those transitioning into males, and breast development for those transitioning into females.
Unknown are the impact on fertility and the effects of taking hormones throughout one's life span. Doctors warn of increased risk of liver inflammation, blood clots and other conditions.
"You weigh your odds," said Tai Jordan, 18, a student at The Evergreen State College who started taking testosterone in biweekly shots when he was 17. He concluded that the benefits outweighed the risks. The hormones were a path to his true self. He always saw himself as becoming "someone's husband, someone's brother, someone's nephew."
Still, he said to himself, "All right, I'm kind of pioneering."
Other teens want the chance to make that decision at an earlier age, in part so that they can develop according to the gender that feels right at the same time as their peers.
Increasingly, providers are adopting an individualized approach that considers younger ages for treatment.
Edwards-Leeper, who leads training workshops that have drawn staff from Seattle Children's, takes note of what she referred to as "gobs and gobs of research" showing that young people's brains keep developing until they're 25. She stresses the need for a comprehensive evaluation to help kids figure out the "very, very complicated" issues of gender identity.
Occasionally, she said, she sees kids who seem to feel boxed in by well-intentioned parents eager to affirm them.
While many who work with these kids say it's extremely rare for kids to reverse course, Edwards-Leeper resists drawing conclusions. "We just haven't been doing this work long enough," she said.
"Like all things in medicine, I can't tell you with certainty what a 12-year-old will say at 18," said Group Health's Sucato.
But there's something else that weighs on her. "We know that gender-nonconforming youth who are not supported are at increased risk for substance abuse, eating disorders and suicide. We know that for certain."
In one survey, almost half of transgender youth said they had thought about taking their lives. So has Skyler.
One battle won, one to go
He said he hasn't acted because of his family and beloved pets: his cat Aqua and parrot Leo, who seems to believe that Skyler, with his shock of vividly dyed hair (yellow and turquoise in August, red in September) is his mate.
The teen went through a period of cutting himself, though, on his "arms, legs, anywhere," he said.
"All you want to do is fix it for them," said Corina Pfeil.
Pfeil, who is divorced from Skyler's dad, has an older autistic child and a medical condition that keeps her from working. She is used to charging through bureaucratic mazes — "up the chain of command to God if she could," said Key, of Gender Diversity.
Pfeil contacted Key after she hit a brick wall at Seattle Children's. He suggested Cedar River Clinics, a feminist health organization that began offering LGBTQ services in 2013. It does not have age minimums for hormones, which Skyler was then seeking.
Skyler got a prescription for testosterone in November. Corina Pfeil said she worried about the fertility risk, but Skyler had no doubts. "It was amazing," he said of suddenly getting what he wanted.
Eight months later, he seemed upbeat. He is now used to shaving and pulling his jeans over hairy legs, but maintaining a softness about him that coincides with a desire not to be "extremely male." A self-described introvert, he lit up when the conversation hit upon his passions: drawing animal sketches; cosplaying, swimming and cross-country running.
His physical activity is limited, though, because of the binding, which presses on his insides. "My lungs are stuck at half-capacity," he said.
So having won one battle, he jumped into the next: getting surgery.
His dad, Rick Pfeil, acknowledged reservations. "Sometimes, it seems like everything is happening pretty early," said the computer programmer.
"Of course, I support Skyler 100 percent," he said. But he has had a harder time adjusting than his ex-wife. "I get the pronouns wrong all the time," he said. "That part of language is just so ingrained in people's brains."
He said he'd prefer Skyler wait for surgery until he became an adult, but made no demands. "I just try to give the best advice I can, and give it as lovingly and non-threateningly as possible."
Skyler and his mom pressed on. They thought they had good news when they walked into Skyler's psychologist's office at Seattle Children's — "a lifeline," said Corina Pfeil, despite her problems with the hospital — and was told the teen's case had been referred to UW Medicine's Gougoutas.
Along with others at UW, the surgeon had launched exploratory talks about opening a program for transgender patients. "I had no intention of operating on anyone less than 18," he said. Kids weren't his bailiwick, he explained, and anyway there were all those thorny questions.
Hope arrived for Skyler in the form of Dr. Jeffrey Kyllo, a Polyclinic plastic surgeon. A few years ago, his colleague Hatfield had asked whether Kyllo would consider performing a mastectomy on a 13-year-old transgender boy.
"That's awfully young," Kyllo remembers thinking. He agreed to meet with the boy but made no promises. Once he talked to the family, he said, he saw how certain everybody was. "He had already been on testosterone for two years," Kyllo recalled. "He had already changed his name legally."
Kyllo performed the surgery. He described it as one of the most rewarding of his career. Before, the 13-year-old was "quiet and withdrawn," Kyllo said. Afterward, "he wouldn't stop smiling."
As he has gone on to operate on some dozen kids since then, he said he still has "a tiny bit of reticence about it at times." He doesn't always understand what's going on in the heads of his patients. As a surgeon, not a therapist, he's fine with that.
What is clearest to him is what he tells his patients: "I have a skill that I can use to help you."
In late September came yet another obstacle for Skyler. Because he is not yet 18, his parents' insurance denied coverage for the procedure, which can cost up to $15,000. "This is not the end of the road," vowed Corina Pfeil, who enlisted the help of activists and a lawyer to appeal.
Skyler was so upset when he heard, he took the next day off from school. Even before this setback, it seemed to him like he was always waiting. He knew what he would say if a surgeon called, willing to operate right away: "I'll be there in 10 minutes."