Making Broken Children Normal
On June 2, 2001, Mohamed and Ahmed Ibrahim were born to a rural laborer and his wife in a small village 500 miles from Cairo. The boys were healthy except for one thing: They're "Siamese twins," fused together at the crown of their heads. Such cases are extremely rare: Only one in every 700,000 births result in conjoined twins. And children joined at the head are rarest and most difficult to separate. Though each boy has his own brain, certain parts are shared, including the critical drainage system that moves excess fluid away from the brain.
The boys are now in the hands of Dr. Kenneth Salyer, a Dallas-based pioneer in the field of craniofacial surgery. In a few days, Salyer, 66, and his multidisciplinary team of specialists will perform a special diagnostic procedure to determine whether the brain's venus draining system is divided evenly enough between the boys to allow both to survive separately.
Sadly, the odds aren't in their favor: Salyer says a review of international medical literature shows exceedingly slim survival rates for separated conjoined infants.
Such difficult pediatric cases are Salyer's everyday work. About 500,000 children are born annually with head and face deformities, such as cleft palate, where there's a fissure in the roof of the mouth, and hypertelorism, where children's eyes are pushed to the outer edges of their faces. In the past, many of these children were kept hidden away or were treated as circus freaks.
But advances in medical technology and the commitment of doctors like Salyer are changing that. Last year alone, the Medical City Dallas Hospital, where Salyer is director of the craniofacial department, performed 775 craniofacial procedures, 210 cleft lip or palate operations, and 220 cosmetic procedures. In the busy summer season, when kids are out of school, Salyer can perform up to four surgeries per day.
Many of those are complex. They require Salyer to peel back the soft tissue of the face, then remove and reshape the bones of the skull. But Salyer sees himself more as a healer than a medical wizard. He's attracted to pediatric craniofacial surgery not because of the highly skilled work it requires but for the ways it changes children's lives. "From the first time I saw a craniofacial operation, I knew this was the way that I could help," he says.
THE DAY JKF DIED.
Salyer's interest in plastic surgery didn't blossom until he was in his early 30s. He had started out following in the footsteps of his father, a Kansas City dentist. But after a year, he longed for more highly skilled work. He switched to medical school, where he studied general surgery.
On Nov. 22, 1963, Salyer was on duty at Parkland Memorial Hospital when President John F. Kennedy was brought in with fatal wounds to the head. "That day had a tremendous impact on me. JFK was one of my idols," Salyer remembers. "After he was pronounced dead, I stood, frozen, as Jacquelyn Kennedy came and performed a ring exchange ceremony... At that moment, I dedicated my life to being the best I could be every day."
Salyer finished his residency at Parkland and then returned to his home town of Kansas City to study plastic surgery. In 1970, he flew to New York to view an invitation-only 13-hour craniofacial procedure conducted by French doctor Paul Tessier. The father of craniofacial surgery, Tessier was the first to understand that bones must be repositioned or reconstructed before soft tissue can be repaired.
DISCIPLES AT WORK.
It was a radical notion. In the 1960s, plastic surgery was primitive at best. In early skin grafts, for example, doctors would sew a patient's legs together to transfer skin, then reseparate the legs after new tissue had grown.
Tessier's methods worked, and throughout the 1970s a generation of his disciples fanned out across the country. Many, including Salyer, started craniofacial surgical centers that were dedicated exclusively to making over deformed children. Craniofacial surgery is now officially a subspecialty of plastic surgery -- and Salyer is the president of the International Society of Craniofacial Surgeons.
For Salyer, "being the best every day" means using new technology to prepare for surgery and give critical advice to patients around the globe. He receives numerous pleas for treatment via his Web site. After looking at photos and the patient's history, he often recommends that the patient get a computed tomography imaging (CT) scan locally. The results are e-mailed to Salyer and, often, to a medical modeling lab that can build exact replicas of the patient's skull.
A SINGLE PASS.
"I can look at a three-dimensional skull and face to plan for surgery before I make a single cut," says Salyer. Right now, he has a perfect model of the Egyptian twins' skulls on his desk. The problematic venus drainage system is accurate to within a millimeter.
Salyer often performs an advanced surgical procedure called a monobloc that remolds his patients' faces in just one operation. Monoblocs are sometimes performed on children born with Apert's Syndrome, a condition where the skull's sutures -- or soft area -- are fused, thus preventing the head from growing big enough to accommodate the brain. The results can be a misshapen head, protruding eyes, or sunken midface. To correct this, Salyer dissects the entire skeleton of the face and moves the forehead and the face forward. He has moved children's jaws as much as 84 mm -- 3.3 inches -- without complication.
In craniofacial surgery, though, technology isn't all that counts. Compassion is critical. Though Salyer can command fees up to $20,000 per operation, he often performs procedures for free. Take Houeyi Edah, an 11-year-old girl from Benin. Houeyi was born with a tumor that spread across half her face, pushing her nose and left eye out of place. In August, 2001, Houeyi flew to Dallas, where Salyer performed a 16-hour operation on her -- at no cost.
The hospital and the World Craniofacial Foundation, created by Salyer in 1989, paid for five months of postoperative treatment, plus food and lodging. All told, these services would normally have cost hundreds of thousands of dollars. "In one operation, we can make a child look normal or almost normal. Every child deserves that, regardless of their financial status," says Salyer. Last year, the foundation donated more than $2 million to pay for medical services that were beyond the reach of patients.
Salyer is also a political advocate. Some medical-insurance plans deny or fight claims for reconstructive surgery for children with facial deformities, claiming the work is "cosmetic" and therefore not a medical necessity -- or that it's a "preexisting" condition. In the mid 1990s, Salyer was instrumental in getting a bill passed in Texas guaranteeing that deformed children won't be denied medical coverage.
He's also lobbying for national legislation that would do the same. A bill has made its way through the House but has failed to reach the floor of the Senate. "Lots of the work I do is educating people," Salyer says. "The public needs to understand that a child with a cleft lip isn't a rare or foreign problem. It happens here every day."
Much work is still to be done. Salyer says advances in tissue engineering, research into stem cells, and the decoding of the human genome will allow craniofacial surgery to take giant leaps forward over the next 10 years. And as always, he'll be leading the way.
By Jane Black in New York