Part two of a two-part series
Dr. Norman Spack has treated teens and pre-teens in the U.S. with puberty-delaying therapy. Polly Carmichael, a doctor in the UK, practices medicine in a country where the therapy is not approved for use. Read their answers to questions about gender identity issues and the ethics of hormone-blocking therapy.
Read part one of this series on gender identity issues.
Note: To protect the identities of this family, NPR has used only first names.
Robert and Danielle instituted an "only-in-the-house" rule when their son Armand was around 5, a modest effort to save him from himself.
By that point, Robert and Danielle were exhausted. They had tried for years to steer Armand away from female clothing, fearing their young son would become the object of neighborhood ridicule. But nothing they said or did seemed to make any difference. There was no dissuading him, and so the only-in-the-house rule seemed like reasonable compromise.
Armand agreed — he even seemed comfortable with it. He spent hours in the basement and backyard, playing with his sister's cast-offs.
But one day, Robert came home early and found Armand out front in the middle of their cul-de-sac. He was wearing a poodle skirt, swaying back and forth, singing. Wanting, Robert says he thought, the whole world to see.
"That caught me by surprise," Robert says. "There was worry."
A Minnie Mouse Dress and a Temper
This obsession with female clothing had started early, when Armand was around 2. He had found an old Minnie Mouse dress the family had gotten at Disneyland. He put it on and then refused to take it off.
"It was like, 'NO!' " Danielle says. "Feet in a stance, a strong stance, just standing there.... She pretty much from that point slept in it, stayed in it all day."
(Danielle and Robert now refer to their son as "she.")
Any effort to remove the dress would provoke an outburst. In fact, the more Robert and Danielle tried to limit Armand's behavior, the more explosive their son became. And it only got worse as Armand got older.
"The terrible twos became terrible threes and fours and horrible fives and intolerable sixes," Robert says. Armand "seemed on edge all of the time."
There were two-hour tantrums. Tornadoes of tears and screaming that left the family exhausted. Any comment could set Armand off, and, once triggered, there was no controlling him.
"One night I remember it got so bad, where she was so out of control ... I literally walked her out the front door and said, 'You need to stay,' " Robert says. "And it was probably at eleven o'clock at night. And I walked her out the front door, closed the door, because I didn't know what to do."
Robert remembers standing with Danielle beside the door, listening to his 6-year-old son scream.
"She was pounding on the door — and my wife and I looked at each other and said, 'What is happening? Why is this child so unhappy? What have we done?' " Robert says.
Doctors and More Doctors
The family consulted mental health professionals with all kinds of initials after their names. They passed out diagnoses with even more initials: ADD (attention-deficit disorder), OCD (obsessive-compulsive disorder).
"I mean, every conceivable diagnosis," Robert says. "But no one could put their finger on it."
Still, while the doctors were unable to find the right label, their son seemed to understand what was going on. Danielle says that during quiet moments, like the ride from school, her child would confess what was causing so much trouble.
"A lot of times she'd come out and say, 'I'm a girl.' No, at first it was, 'I want to be a girl,' then it's like 'No. I am a girl.' And she'd ask if me if I [thought] she was crazy and I'd say, 'No, honey, you know, it's OK.' And in the front, you know, I'm driving going ... 'Oh my gosh, what is this?' " Danielle says.
Gender Identity Disorder
After many years, the family found a psychologist who had experience with gender issues. At the end of a two-month evaluation, the therapist gave them a diagnosis: gender identity disorder.
Gender identity disorder is the label most psychiatrists and psychologists give to children who believe themselves to be born into the wrong biological body. It involves a range of behaviors, but on one end of the spectrum there are children like Armand: kids who are more than effeminate boys or masculine girls who may turn out to be gay in adulthood. These are children who genuinely believe they are girls — even though they have a male body — or boys, even though they have a female body.
The doctor explained that their son would, in all likelihood, grow up to be transgender — someone who lives as a member of the opposite sex.
Robert and Danielle say that at this point the diagnosis was more of a relief than a shock. They decided almost immediately to stop trying to force their son to live as a boy. And then looked, with some anxiety, to the future. Armand was close to 11 years old.
"We knew that puberty was around the corner and we needed to start looking into ... what do we do," Robert says. "How do we help this child, you know, develop in a way that is consistent with who she is."
A New Treatment
Robert and Danielle soon came to find out about a new, highly controversial, treatment for preteen kids with gender identity issues. The treatment allows kids to postpone puberty and avoid developing the physical attributes of the sex they were born with.
The treatment has been offered in the United States only for around four years. Essentially, kids who meet the criteria for gender identity disorder are given monthly injections of a medication that blocks their bodies from releasing sex hormones. This means that while the children continue to grow taller, for the three or four years they are on the medication, they are kept from maturing sexually.
Norman Spack, an endocrinologist at Children's Hospital in Boston, was one of the earliest practitioners of this treatment in the United States. He explains that doctors have actually been able to block sex hormones for decades — the technique has been used to treat everything from prostate cancer to fibroids — but it was only about 10 years ago that a medical group in the Netherlands decided to use it on kids like Armand.
"They had the idea. ... They decided to see what would happen if they took such a child that was in such distress over their body, [and stopped their body from] taking the form that they feared," he says.
To put off puberty, children –- usually between 10 and 13 — are injected with hormone blockers once a month. Spack explains that the blockers only affect the gonads, the organs responsible for turning boys into men and girls into women.
"If you can block the gonads, that is the ovary [in women] or the testis [in men], from making its sex steroids, that being estrogen or testosterone, then you can literally prevent ... almost all the physical differences between the genders," Spack explains.
Without testosterone, boys will not grow facial or body hair. Their voices will not deepen. There will be no Adams apple, and height growth will slow. Without estrogen, girls will not develop breasts, fat at the hip, or menstrual periods. And since most growth happens before puberty, if you block estrogen — and therefore puberty — girls will grow taller, closer to a typical male height.
The hormone blockers are the first stage of the treatment, but there's a second stage that's possible. Once children have postponed puberty for three or four years, at around age 16 they can choose to begin maturing sexually into the opposite gender, the gender they want to become. To do this, they begin taking the hormones of the opposite sex. For males, taking estrogen at this point will bring on breast and hip growth — and all the attributes physical and emotional of females. The reverse will happen for girls who take testosterone. Spack says this treatment can help make an adult transgender male almost indistinguishable from a biological male in terms of physical appearance.
"We can make it possible that they can fit in in the way they want to. It is really quite amazing," he says.
If, however, puberty is not blocked — if it is allowed to happen naturally and sexual maturity takes place on time — fitting in as a transgender adult is more difficult. An adult man who chooses to become a woman by taking estrogen will still tower over other women. He'll have larger hands and feet, a pronounced brow, and facial and body hair that will need to be removed. These are physical attributes that can set a transgender person apart and make day-to-day life more difficult.
This is exactly the fate that Robert and Danielle hope to help Armand avoid. Armand will soon start the hormone blockers, but in the meantime, he is already living as a girl. Danielle says she and Robert decided to allow Armand to transition after they got the official diagnosis.
"Once we officially knew that [Armand] was transgender it was like, 'What do you need? You tell us.' We weren't going to try to control anymore; we'd been doing that for years. So it was like, 'What do you need? What do you want?' " Danielle says.
Armand was clear. He wanted to be called Violet, not Armand. He wanted to be known as their daughter, not their son. He wanted his parents to call him a "she."
Robert and Danielle agreed. The first official day of Violet's new life was Aug. 19, 2007. It was the first day of a family vacation. Armand — now Violet — was 10. And Robert says her emotional transformation that day was nothing short of astonishing.
"It was the happiest kid I'd ever seen. Just lit up. Just ... brilliant and funny and these things that we caught glimpses of that weren't always there," he says.
Since the transition there has not been any real outburst. Still, there have been challenges. Last September, Violet returned to school, this time as a girl. Though the school was supportive, Robert says he and Danielle were terrified.
"You know just that walk from the car to the front doors of the school was the longest walk of our lives," he says. "Violet broke my heart and I was proud of her all at the same time," Robert says.
He says when Violet got out of the car she immediately put a on long coat and put her hood up. She started walking behind her father and mother. "We said, 'No!' You are not going to do this. You're not going to walk behind anybody. We're going to walk together. And we held hands and we marched right up the sidewalk into those doors. Into an extreme unknown," he says.
And their worst fears — of ridicule, of violence — were not realized. At the end of the day, Violet skipped to the car and reported she had had a great day.
Robert says that since the family event, and Violet's transition, there's been a new level of peace in his household, a liberating clarity. "There is no doubt at this point in our lives that we have a transgender child. ... And there is no doubt in our mind that we are going to do what we can to help her," he says.
A Side Effect of Treatment
But not everyone believes that it is possible to know with this level of certainty that a child is transgender. There are two views in this debate.
Polly Carmichael, a British psychologist who works at the Portman Clinic in London, which has a unit specifically dedicated to gender identity, says the identity of most children this age is in constant flux.
"You can have a child who is presenting with absolute certainty, but it may be that at a later point they will decide that is not in fact what they want and their feelings may indeed change," Carmichael says.
The Portman clinic has treated 124 kids since 1989. It requires children to live as the gender they were born with. And 80 percent of its patients — once grown — chose as adults to keep their biological gender.
The opposite outcome was seen by the researchers in the Netherlands who first developed the hormone-blocking treatment. They have treated 100 patients and all chose — as adults — to live as the opposite sex.
So the verdict is still out about how many kids with gender identity disorder will choose sexual reassignment as adults — that is, to live as a member of the opposite sex by changing physical appearance or by having a sex change operation. This makes deciding on treatment very difficult, because there is one very serious side effect to the second part of the treatment.
Taking testosterone or estrogen immediately after blocking puberty will make a teenage patient sterile.
Spack, the endocrinologist at Children's Hospital in Boston, says that because the gonads do not mature before they are exposed to the hormones of the opposite sex, the gonads become too damaged to produce either viable eggs or viable sperm.
"This is one of the most controversial aspects of this. At what age can a young person fully understand the implications of doing something that will make fertility for them, by today's technology, virtually impossible?" he says.
Spack, however, is quick to point out that there is no risk of infertility from the hormone-blocking treatment alone. Infertility only comes when the hormone-blocking treatment is paired with Stage 2, the use of opposite-sex hormones. And so, Spack says, hormone blockers should really be seen simply as a treatment that gives families more time to think about what to do.
"It's a lot different to be talking to a 14-, 15-, 16-year-old about the implications of this than a 10- to 12-year-old," he says. "And so it buys you time ... without the tremendous fear of their body getting out of control."
Heading into the Future
Robert says he, too, sees the hormone blockers as a way of buying time. And he remains absolutely certain that Violet is genuinely transgender. In fact, he finds himself almost offended when people suggest that he and his family have been too quick to embrace a transgender identity.
"It puzzles me because we even have well-intentioned parents who we care about and who know us ... say, 'Well she's too young to know!' Well, when did you know you were a girl? When did I know I was a boy? I knew my whole life, I can't tell you exactly when, but it wasn't like I was 10 and realized, 'Oh gee, I must be a boy!' " Robert says. "What people fail to realize is they made that decision way earlier than that. It just happened that their gender identity and their anatomy matched."
In terms of how Violet thinks about hormone blockers, her older sister, Melina, says that the problem of puberty is very much on her mind. "She's getting hair in some places and stuff and ... every day she says that she feels a little bit more manly. Which is really hard for her."
Melina, who is 14, says she sometimes thinks about what it would be like if she woke up every day to a body that was slowing turning male. If she were growing in ways that felt alien and frightening.
"To go through the process of the gender that you're really not ... that must be the most scariest most disgusting thing ... I can't even imagine what that's like," she says.
You can hear the radio version of this story by listening to today's On Health podcast.