Norman Spack: Saving transgender lives

SpackNorman_06In traditional Navaho culture, individuals with the physical or behavioral features of both genders are considered “two-spirited” and often arbitrate in marriage disputes because they’re trusted to see both sides of the story. In the broader American culture, though, identifying with a gender different from the one assigned at birth—what we call transgender—is not fully understood or accepted.

That’s changing—slowly. Recent cultural developments—including the rise of transgender characters in TV shows such as “Orange is the New Black” and “Transparent” and the high-profile transitions of celebrities like Bruce Jenner, who is being interviewed by Diane Sawyer on ABC’s 20/20—have brought about a heightened interest and awareness of the transgender population and their journey towards acceptance.

That journey can be especially challenging for transgender teens and young adults, a population with a startlingly high rate of suicide attempts and mental health struggles. We sat down to learn more about transgender youth and adults from one of the leaders in the field, endocrinologist Norman P. Spack, MD, co-director (with Urologist-in-Chief David A. Diamond, MD) of the Gender Management Service (GeMS) program at Boston Children’s Hospital—the first of its kind in the nation.

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Guatemalan teen with congenital heart defect inspired to study medicine

Juan PabloAs a child growing up in Guatemala, Juan Pablo was told by his parents that he was born with a little hole in his heart that was patched up. “It wasn’t until I was a teenager that I figured out that what I had was not that simple.“

Juan Pablo was born in 1995 with Tetralogy of Fallot (ToF), a condition involving four different congenital heart defects. With no pediatric cardiac surgeons in Guatemala at the time, Juan Pablo’s parents took their newborn son to Switzerland for treatment, which included open heart surgery to remove his pulmonary valve. He went on to lead a normal, healthy childhood.

As he matured, Juan Pablo began to ask questions about his condition and his past. He found out that his surgery in Switzerland was performed by Aldo Castañeda, MD, a native of Guatemala who had retired in 1992 as Chief Cardiac Surgeon at Boston Children’s Hospital. Juan Pablo also discovered that Castañeda was back in Guatemala running the country’s first pediatric cardiac care program at Unidad de Cirugia Cardiovascular Pediatrica de Guatemala (UNICARP).

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Climbing mountains: “I won’t let ulcerative colitis define me”


Mark Donohue craves outdoor activity. While most were braving Old Man Winter’s 2015 wrath, this 19-year-old Ticonderoga, New York native embraced Mother Nature and hiked to the summit of his home state’s Black Mountain, tackled the slopes in Colorado and pond-skated locally with friends.

Mark says his love of the great outdoors and his quest to climb new personal heights has never been overshadowed by ulcerative colitis.

“I won’t let the disease define me,” says Donohue, a college freshman at Binghamton University in New York. “I take it in stride, stay positive and don’t let ulcerative colitis dictate the kind of person I want to be.”

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Craniosynostosis: Heading in the right direction

craniosynostosis endoscopic
Credit: Rachel Larson Photography

When Ella Dorsey was born, her father Paul noticed something different about the shape of her skull. Her mother Cynthia, tired after the birth, assumed Ella’s head had gotten a little misshapen going through the birth canal, not an unusual thing to happen. But just before they were discharged, Cynthia noticed that a pediatrician she hadn’t yet met was paying particular attention to Ella’s head.

“She was holding the baby, touching her head, constantly going over the baby’s skull,” she remembers. “I finally said to her, ‘Is the baby OK?’”

That’s when Cynthia first heard the term craniosynostosis. She felt the bony ridge at the top of Ella’s head where the plates of her skull had fused together too early. Normally, these plates stay open into puberty to allow the brain room to grow, but in 1 of about 2,500 babies, the plates fuse together too early.

“I’m hysterically crying, shocked, still not knowing what this condition is,” Cynthia recounts. “As a parent, I’m thinking, ‘She’s going to have issues that will last a lifetime.’ I probably cried more than I cried in my entire life.”

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