When he rose from his chair to shake his surgeon’s hand, 17-year-old Nicholas Peters stood 4 inches taller than he had just a few months before. “Thank you for making me feel better,” Nicholas said to Dr. Michael Glotzbecker, the surgeon from the Boston Children’s Hospital Spinal Program who had operated on his spine. With a little prompting from his parents, Nicholas added, “I can bend over to play with my jeep.”…
On a snowy Saturday in January, two mothers sat sipping tea and conversing about their sons. It was an ordinary scene, but the women’s conversation was far from ordinary.
The scariest thing a doctor can tell you is ‘I don’t know. I’ve never seen this before.’ To find two doctors who treated this before and then to see Dan doing so well is tremendously gratifying. ~ Susanne Malloy
Susanne’s son Alexander Malloy, 14, had been recently diagnosed with Gorham-Stout disease. Gorham-Stout, also referred to as “vanishing-bone” disease, triggers a process that destroys bones and typically affects a single area like the shoulder, jaw hip, rib or spine.
“It was shocking,” recalls Susanne. An MRI earlier that week, prompted by a worsening of her son’s mild scoliosis, had shown Alex was missing bones in his spine and likely had Gorham-Stout.
After the MRI, Alex’s orthopedic surgeon, Dr. Lawrence Karlin, reassured Susanne and her husband Tom that Boston Children’s Hospital would have a plan for their son.
As Susanne and Tom digested the diagnosis, she began thinking Gorham-Stout, a rare bone disease of the lymphatic system reported in about 300 patients, sounded familiar. “I can’t have heard of it before,” she told herself.
The feeling persisted, so she called a friend, who said, “That sounds like Dan Ventresca.”
Twelve years earlier, Dan, who lived a few streets away from the Malloys in Hingham, Massachusetts, had been diagnosed with the same disease. Like Alex, Dan’s disease was located in his spine. Susanne’s friend called Dan’s mother. …
Meet Meghan Dwyer — a typical busy high school student who loves field hockey, Disney movies and dance. Like thousands of other Massachusetts middle and high school students, Meghan participated in regular well-child and school screenings for scoliosis. Everything checked out fine.
Early in Meghan’s sophomore year; however, her mother Tricia, a nurse, noticed her daughter’s back appeared a bit crooked. She made an appointment with Dr. Dan Hedequist, an orthopedic surgeon in the Boston Children’s Hospital Spinal Program. “We didn’t think the curve was too bad and were shocked to find out it had progressed to 50 degrees,” recalls Tricia.
With a 50-degree curve, Meghan needed spinal fusion surgery. Less than 1 percent of girls with scoliosis have curves that require surgery, says Hedequist.
The Dwyers scheduled Meghan’s surgery for June 15, 2015, shortly before the end of her sophomore year.
Nearly one year after her surgery, Meghan is brimming with advice for other teens. …