John Siebert Offers Hope for Patients with Parry-Romberg Syndrome
When her parents brought newborn Lucy Hancocks home to Moonta Bay, not far from Adelaide, Australia, her mother noticed there was something a bit off about the baby’s face.
By the time Lucy was a few months old, concerned mom Jodie Hancocks had started visiting specialists to learn why the left side of her baby’s face seemed pinched and discolored by blotchy skin. When Lucy was 8 months old, her parents had an answer: Lucy had a rare condition called Parry-Romberg Syndrome (PRS).
“It was devastating,” says Hancocks. “The doctor said, ‘Don’t go home and look on the Internet. There’s nothing you can do. We will just wait until she’s grown, and then we will repair it.”
Determined to learn more, and hopeful that someone could do something sooner than that doctor advised, Hancocks went home, searched the Internet and found information about John Siebert, MD ’81, all the way around the world at the University of Wisconsin School of Medicine and Public Health (SMPH) in Madison.
A professor in the School of Medicine and Public Health Division of Plastic and Reconstructive Surgery within the Department of Surgery, Siebert has become the world expert in treating PRS. He has seen more than 500 patients with the disorder and is one of the first physicians to advocate treating children like Lucy at a young age, before their faces become noticeably asymmetrical.
Lucy, now 4 years old, arrived in Wisconsin in late March to have Siebert perform the girl’s first microsurgery.
As Hancocks had learned, in the past, physicians waited until the child had stopped growing before attempting treatment. However, during the 20 years Siebert spent at New York University (NYU) Medical School - where he was part of a multidisciplinary team that included psychiatrists, orthodontists and others - he pioneered treating children at a young age.
'It is Like 'Build a Bear' at the Mall'
Discovered by a pair of 19th-century pathologists, PRS causes wasting of one-half of the face. Often, the first sign is the “coup de sabre,” a gray shadow down the middle of the forehead that marks the delineation between healthy tissue on one side and diseased tissue on the other.
It is a rare disorder, with fewer than 1,000 cases estimated worldwide, but Siebert believes some cases are missed.
Siebert says PRS is thought to be an autoimmune disease along the lines of scleroderma or lupus. It begins in the fat of the face, which abruptly starts dying. Tissue death can spread to underlying tissues and facial bones, and can affect the hair and neck. It is more common in females and on the left side of the face.
Siebert’s two-fold contribution to treating the disorder is significant. First, he pioneered surgery on children as young as 3 years old. Second, he developed a microsurgery technique that involves transplanting a free flap of vascularized tissue, usually from near the armpit. He reattaches the veins and arteries to this flap and “sculpts” the transplant to even out the face.
“I tell my pediatric patients that it is like ‘Build a Bear’ at the mall,” he says. “We have the skin, but we need to bring in the stuffing and stitch it so it stays in the right place.”
Siebert uses similar techniques to treat patients with other types of facial asymmetry, including Treacher Collins syndrome and various types of hemifacial atrophy.
Some health care providers questioned whether surgery on young patients would last. So, for 25 years, Siebert and his NYU team followed a cohort of 25 children who had surgery before age 8. They found that none needed the follow-up jaw surgery that is commonly required to correct deformities in patients who aren’t treated until an older age. This suggests the new, healthy tissue somehow stops the disease from progressing into the facial bones.
“We learned that if you intervene earlier, the patients’ self-image is improved, their childhood is better, and they grow up to be more productive adults,” he says. “It gives them a chance to have a relatively normal childhood.”
Strong Wisconsin Roots
This expert, who cares deeply about his patients’ childhood, has special memories of his own youthful years in Baraboo, Wisconsin.
Siebert’s father, who shares his name, and uncle - John Siebert, MD ’55, and Eugene Weston, MD ’55 - founded the Medical Associates practice in Baraboo. The younger Siebert grew up swimming in Devil’s Lake and accompanying his dad on house calls. He met the love of his life, Kimberly Bildsten, in first grade.
“Baraboo was a great place to be a kid,” he says. “I knew from the time I was 7 years old that I was going to be a surgeon.”
Siebert played basketball and golf at Wheaton College in Wheaton, Illinois - he’s still ranked as one of the nation’s top physician golfers by Golf Digest - and came to Madison to join the School of Medicine and Public Health Class of 1981.
He recalls medical school as “a lot of fun,” and describes a work-hard, play-hard group of friends. They’d study until 10:30pm or so, then hit the Camp Randall Shell for a game of basketball. One beer at the Stadium Bar, and they’d go home to sleep.
He’s still close with fellow Class of 1981 alumni Tony Richie, MD, now practicing in St. Paul, Minnesota; and Dave Eggert, MD, Jack Anderson, MD, and Tom Winek, MD, who practice in Appleton.
“They’re such good friends that you can pick up with them right where you left off,” he says of their regular reunions.
After graduating from medical school, Siebert began a surgical residency at Massachusetts General Hospital in Boston, convinced that he was training to become a pediatric surgeon. But in the course of his residency, he realized all the really interesting techniques he was learning were in plastic surgery.
“I also realized that I loved being able to operate on all parts of the body, and I love the creativity and the immediate feedback of plastic surgery,” he says.
He and Kimberly were happy in Boston, but NYU, which had one of the top plastic surgery programs in the world, came calling.
The Sieberts moved to New York City, where he eventually became chief of plastic surgery at Bellevue Hospital. There, they raised their children - Ashley, now 30 and working on Wall Street, and Christopher, a basketball player at Lawrence University in Appleton, Wisconsin - but always kept a home in Baraboo for summers and holidays. The Siebert children grew up as Green Bay Packers fans, and they told people they were “from New York - and Wisconsin.”
Siebert says his family loved the energy of New York, and his practice flourished. With his invention and refinement of microsurgery techniques, Siebert became world renowned for his treatment of facial asymmetries.
He was regularly named by New York magazine as one of the top doctors in the city, and he won the prestigious James Barrett Brown prize from the American Association of Plastic Surgeons for his contributions to the field. Outside of medicine, he was a member at the famed Winged Foot Golf Club.
But once Ashley was in college, Chris announced that he would like to go to high school in Baraboo. Additionally, Kimberly’s aging mother in Baraboo needed more help. Wisconsin beckoned.
Upon learning that Siebert wanted to move “home,” Michael Bentz, MD, professor and chair of the School of Medicine and Public Health Division of Plastic and Reconstructive Surgery, was thrilled.
“He’s a world authority on microsurgery and a master surgeon,” Bentz says. “Everything he does, he does well. People love to watch him operate. He’s so technically proficient, it’s like watching ballet.”
Siebert says that several developments made it possible for him to return: the construction of the American Family Children’s Hospital and the UW Health Transformations Clinic, among the locations where he now practices, and the completion of Highway 12 as a four-lane route between Madison and Baraboo. His commute to Madison takes as long as his former commute to Manhattan, but is more scenic and leisurely.
This summer, he’s planning to hit the Wisconsin senior golf tour and play some father-son tournaments with Chris. He says he finds golf both challenging and humbling, and says he feels close to both his son and his late father when he’s on the course. Even though the Baraboo Country Club doesn’t have quite the reputation as Winged Foot, Siebert is fine with the tradeoff.
“You can take the boy out of Wisconsin,” he says. “But I guess you can’t take the Wisconsin out of the boy.”
Patients Show Appreciation
And, thanks to the Internet, Siebert’s patients have no trouble finding him, whether he’s in Madison or Manhattan. When Hancocks launched her search, she found a CNN.com story about another of Siebert’s PRS patients, Christine Honeycutt of North Carolina. Hancocks reached out to Christine’s mother, Vicki Honeycutt, via the “Christine’s Champions for Hope” website.
Honeycutt encouraged the Hancocks family to come to Madison for Lucy’s surgery and helped them start “Lucy’s Champions for Hope,” which raised enough money to bring their entire family to the United States for Lucy’s surgery.
Siebert and his staff scheduled Lucy and Christine, who needed follow-up surgery on her nose and eyelid, for the same week in April, so the two families could meet in person. Despite the different accents, they had much in common, especially a fondness for the plastic surgeon who helped save their daughters’ faces.
“We just love Dr. Siebert and would do anything for him,” says Honeycutt, who started a patient tribute Internet page devoted to Siebert. “He’s not only a great surgeon, he’s a wonderful, caring human being.”
By Susan Lampert Smith
This article appears in the spring 2013 issue of Quarterly.
Date Published: 07/08/2013