Saving Face

Aslynn Brown and her mother, Jill, following surgery to remove a life-threatening tumor from the back of Aslynn's head.Photo: Amy Arbus

In the fall of 2002, when Jill Brown was pregnant with her first child, she saw a TV documentary that focused on children whose faces were marred by tumors. She wasn’t spooked. She thought to herself, “If that’s my child, I’ll be able to handle it.” She was 25, an energetic former college-soccer player with great reserves of patience. A previous pregnancy had ended in a miscarriage, and she was anxious for a better outcome this time. When, on February 16, 2003, she gave birth to a healthy girl weighing seven pounds, thirteen ounces, Jill was overjoyed. The baby was beautiful and feisty. Jill and her husband, Paul, who worked at John Deere Credit in Johnston, Iowa, a suburb of Des Moines, named her Aslynn, a variation on the name of the godly beast in The Lion, the Witch and the Wardrobe. “We could tell she was going to tackle life in her own way,” Jill says.

About a week after bringing Aslynn home, Jill spotted a pale-red patch on one side of the baby’s head. She wondered if it was a rash from cradle cap. At Aslynn’s two-week pediatric checkup, Jill asked the doctor if she should put lotion on the skin. The pediatrician told her it was a birthmark, that it would go away before too long, and that its location was fortunate—soon it would be covered with hair.

A few weeks later, Aslynn’s extended family gathered for her baptism. By this point, the birthmark had turned a deep shade of cranberry, and it was blistered and swollen. The change had been gradual, and Jill, who was with Aslynn virtually around the clock, had barely noticed the difference. She did, however, note the startled reaction of her relatives, and she asked her doctor for a referral to a pediatric dermatologist. “That was when we started down the wrong path,” Jill says.

Aslynn at home, two weeks before the procedure.Photo: Courtesy of Jill Brown

The dermatologist told the Browns that the birthmark was a hemangioma, a noncancerous tumor composed of a clump of blood vessels run amok. “The doctor said there was nothing to be done about it, and nothing to worry about. He said it should go away by itself by the time Aslynn was 8 or 9, and we’d just have to live with it.” For Jill, who had feared the worst—cancer or brain damage—the diagnosis was reassuring. She trusted the authority of doctors.

At 4 months, however, the hemangioma had spread to Aslynn’s neck and begun to form a thick, softball-sized mass. Jill also noticed swelling in Aslynn’s throat and on her tongue. Scabs appeared on her head, and left scars when they fell off. Aslynn would tug repeatedly at her left ear, which was now bent from the weight of the growth. The skin between the ear and scalp was cracked, and often bled. Jill prevailed on her pediatrician to schedule an MRI, and when it showed normal brain function, Jill was again relieved.

“Aslynn’s physical development had ground to a halt. Her heart had been strained to its limits by the tumor’s demands.”

But the mass continued to grow. “It was hard to even track its progress,” Jill says. “It had no boundaries.” The tumor soon covered the back of Aslynn’s head, and drooped over her upper back. It was pink and purple, its surface sketched with veins. It felt soft to Jill, like a pillow, and she would curl against it as Aslynn slept. Despite the fact that Aslynn had become steadily more disfigured, Jill continued to have faith in what the doctors had told her. She remained enamored of her baby, and was stubbornly blind to her “birthmark.”

Others were not. Aslynn’s appearance elicited a stream of comments from strangers. Jill considered many of the comments innocent, even charming—children asking why Aslynn’s head was so large, or why it had been painted red—but other remarks were wounding. In the public library, a 10-year-old boy circled Aslynn before shouting at Jill, “That’s the most disgusting thing I’ve ever seen. I’m getting out of here before I’m sick.” At Gymboree class, another mother approached Jill in tears and said that Aslynn’s presence had “traumatized” her.

Jill began to worry about the treatment Aslynn would get from children when she was old enough to go to school. She couldn’t believe nothing could be done, so she arranged to see an internationally recognized specialist in pediatric otolaryngology. The specialist was blunt with her. The mass had grown too large to treat with steroids, he said, and was too deep to be repaired by lasers. As for surgery, the doctor dismissed the possibility as too risky. A hemangioma, he explained, was like a sponge, saturated with blood vessels. Cutting into it would likely trigger catastrophic blood loss. Surgery, he concluded, would be “bad medical practice.”

Okay, Jill thought, I’ve exhausted my options. I’ve done testing and seen the best specialists. It’s time to move on. As long as Aslynn is healthy, it doesn’t matter how she looks.

In December, Aslynn’s pediatrician detected a heart murmur. Again, nothing to worry about, Jill was told, but worth a trip to the cardiologist. A battery of tests followed. The results were peculiar. Aslynn’s heart had grown enlarged from pumping out a higher-than-normal volume of blood to “feed” the tumor. But the blood, and its nutrients, were being siphoned off by the mass. As a result, Aslynn’s physical development had ground to a halt—she had gained barely one pound in the previous four months—and her heart had been strained to its limits by the tumor’s demands. The diagnosis: high-output cardiac failure. Aslynn was immediately put on two powerful medications. She would have to remain on them, Jill was told, until the hemangioma went away of its own accord. It could be eight years, ten years, twelve—if Aslynn lived that long.

Waner with Aslynn, several days after her surgery, in the Beth Israel playroom.Photo: Courtesy of Jill Brown

Jill was in a panic. Her mother-in-law had been researching Aslynn’s condition, and learned about a doctor in Little Rock, Arkansas, named Milton Waner, whose practice was devoted exclusively to treating vascular anomalies like hemangiomas. The Internet was brimming with testimonials to Waner’s miraculous skills. Jill and Paul put Aslynn in the backseat of their Toyota Echo and made the ten-hour drive through winter weather. They stayed at a Ronald McDonald House. In Waner’s waiting room, they saw other children with hemangiomas for the first time. When they met Waner, “he seemed to have all the time in the world for us,” Jill says. She was impressed with how gently he played with Aslynn. He was soothing and confident in equal measure. He glanced at Aslynn’s hemangioma. “Oh, this is a big one,” he said. “I can fix it.”

Milton Waner is a slight, scholarly-looking man of 50 whose wanderings have taken him from South Africa to Australia to Arkansas to the Upper East Side of Manhattan, where, on April 28, in Operating Room 11 on the neurosurgery ward of Beth Israel Medical Center, he peered down at the inflamed mass on Aslynn Brown’s head.

Waner, the object of a year’s wooing by Beth Israel, had moved to New York two weeks earlier (he was still living in an extended-stay hotel) with the intention of pushing his vanguard work on vascular lesions to an even higher level. In New York, he could collaborate with some of the world’s leading researchers and specialists, experts in neurosurgery, radiology, and orthopedics, people he described as doing “space-age” work. As for Aslynn Brown’s parents, they had come to the city for the most elemental of reasons: to save their daughter’s life.

The Browns had never before been to New York. The previous day, at Waner’s urging, they had taken Aslynn to Central Park, and for a ride on the subway. They had glimpsed the Statue of Liberty and toured ground zero. Aslynn was delighted by the sights and sounds of the city. Passersby paused to greet her, and she beamed. No one had remarked on her appearance.

Now she lay on a steel table in the eerie stillness of anesthesia, wearing only a diaper, her 29-inch, 19-pound body covered to the chest in a sheet of plastic and a warming blanket. A clip on her big toe ran to a computer that monitored her vital signs. One thigh bore a patch that connected her to an electrical ground. Her head was partly shaved, and the skin surrounding her tumor was painted with a rust-colored anti-microbial paste. A ventilator tube ran down her throat.

Waner and his entourage—a surgical assistant, a technologist in charge of the instrument tray, an anesthesiologist, and a nurse directing the flow in the room—hovered over Aslynn. She looked perfectly serene.

“Remind me,” Waner said. “How old is the child?” Fourteen months, he was told. Waner turned Aslynn on her side. The mass on the back of her head accounted for 10 to 20 percent of the girl’s body weight, Waner estimated. He poked and prodded it, trying to get a feel for the best spot to make his incision. He asked for a marker and began to trace a fine black line around the edges of the mass. He moved with a deliberation that could have been mistaken for hesitancy. “If you’re too sure of yourself,” he says, “it’s a recipe for disaster.”

Aslynn’s case made Waner anxious. He had stayed up late the previous night studying an MRI of the tumor, and had awakened before dawn to clear his mind by playing guitar in the dark. He knew that Aslynn’s hemangioma crisscrossed the neighborhood of hair-thin facial, cranial, and spinal nerves, any of which, if severed, could leave her with a variety of irreversible paralyses. The tumor would have to be shaved off muscles on the back of Aslynn’s neck, a procedure that could saddle the infant with chronic, debilitating neck pain. Great care would also be needed to skirt the jugular vein and the carotid artery. “The neck,” Waner says, “is tiger country.”

Above all, “the problem is how to cut through the patient and not have her bleed to death as a result,” Warner says. Aslynn’s hemangioma had developed an artery whose purpose was to shunt blood from her heart to the tumor. The artery was as thick as a straw, and was feeding the tumor half of her blood supply. It bulged from the base of her neck. “She would be in a lot of trouble if I made a hole in that vessel,” Waner says.

Waner asked for a cold steel scalpel. He brought the blade to a point above Aslynn’s ear. He paused. He applied pressure to the knife and sliced into the tumor. “It bled and bled,” he says. But “I kept cutting.”

Waner is far and away the world’s leading expert in the treatment of vascular anomalies. He has pioneered groundbreaking methods that have provided safe surgical treatment for patients with all manner of deforming, and often life-threatening, problems, and he has operated on more than 4,000 such cases—far more than any other surgeon.

To hear Waner tell it, he didn’t set out to revolutionize the field of vascular anomalies. He simply happened upon a problem that had confounded medicine for years, gave the matter some probing thought, and went about finding new solutions. Waner was born in Brakpan, South Africa, a small town near Johannesburg. His father, who immigrated to South Africa from Lithuania as a child and had little formal education, worked as a tailor, and gradually became a prosperous men’s clothier. Waner’s mother, a Greek Jew whose family fled the Nazis, landed in South Africa via Egypt and the Belgian Congo. Waner trained as a surgeon at the University of Witwatersrand, and specialized in head and neck cancers. In 1985, after being posted to Namibia for compulsory military service—an experience he found “loathsome”—he began to research the use of lasers in cancer treatment. A year later, during a research stint in Australia, he helped to develop one of the first lasers that was capable of “selective destruction”—it emitted just enough energy to cook the targeted tissue without damaging surrounding, healthy areas. The laser turned out to be ideal for treating birthmarks like port-wine stains, which are caused by an abnormal pooling of blood beneath the skin. Soon Waner was restoring long-suffering patients to an unblemished state.

Word spread, and before long, Waner was being sent patients with more severe vascular lesions, like hemangiomas. Although vascular anomalies are not rare—in the U.S., 40,000 infants are referred to specialists each year for examination of a range of abnormal birthmarks—the dominant protocol for treating hemangiomas has long been benign neglect.

Waner learned that little new thinking had been done on the subject of hemangiomas since 1929, when an article in a medical journal reported that the tumors, which appear in the first month after birth, typically wither on their own by the time the child approaches adolescence. This natural regression made it convenient for insurers to classify treatment of hemangiomas as elective, and to deny coverage. Not only did the prospect of unreimbursed work sap surgeons of the inclination to treat the tumors, but hemangiomas, with their unruly clusters of blood vessels, were apt to summon up a surgeon’s nightmare: babies dying on the table of blood loss during a procedure that could be derided as “cosmetic.”

“You show this picture to most surgeons,” Waner told me, “and most of them would run a mile in the opposite direction.”

We were sitting in his office, and Waner was thumbing through a binder containing photos of hundreds of patients on whom he had operated. The snapshot in question featured an infant whose right eyelid had all but disappeared under what looked like a rotten plum. Waner explained that the hemangioma was blocking visual stimuli and causing the child to go blind. Another photo showed a child with an inflamed, fist-size protuberance dangling from her nose. “That child reflexively put her hand in front of her face when anyone looked at her,” Waner said. “You can’t for one moment call these surgeries cosmetic.”

Waner knew that operating on such children, against the advice of the medical establishment, was risky. “I was going out of line,” he says. “But clearly the way we were approaching these children was wrong, and something had to be done.” He had discovered that, contrary to orthodox belief, severe hemangiomas rarely healed completely without intervention. Rather, they often left behind damaged skin that had to be surgically repaired, and organs whose functions had been impaired by pressure from the tumor. In extreme cases, like Aslynn’s, the tumors could be life-threatening. Waner was also keenly aware of the psychological trauma suffered by disfigured children. “The world is a cruel place for these children,” he says.

As Waner found, “There was no manual to show you how to do these surgeries. It was completely uncharted territory. I had to improvise as I went.” Waner brought a unique blend of assets to the task. He had cut his surgical teeth on cancerous tumors, but unlike most tumor specialists, he also had extensive experience with the techniques of plastic surgery. While other surgeons would typically try simply to cut a hemangioma off the skin, producing large areas of skin loss and requiring extensive reconstructive surgery, Waner had developed a method for folding back the skin, working the tumor out from underneath, and tailoring the remaining skin so that scarring was barely noticeable. He also found ways to stanch the severe blood loss. His primary tools were cauterizing devices that plugged blood vessels as he cut. He also enlisted radiologists to plug blood vessels in order to harden the tumors before excision.

Waner thrived on intellectual adventure, and was eager to tackle problems that others avoided. Not least of all, he found himself consumed with sympathy for the plight of his patients and their families—a situation he relates to his childhood in South Africa. “I saw the most terrible injustices being inflicted on blacks,” he says. “And I felt powerless to intervene.”

Waner also felt marked by having been a Jew in a society he described as rampant with anti-Semitism. “I had teachers who referred to me as ‘Jew-boy’ or ‘dirty Jew’ in front of the class. I remember being beaten up in the second grade by boys who accused Jews of killing Christ. I never felt like I belonged in South Africa,” he says. “I felt like a pariah. So naturally I find it emotionally gratifying to be able to help the children who are my patients.”

After two years in Australia, Waner took a job at Arkansas Children’s Hospital, in Little Rock, which supported his forays into the treatment of vascular tumors. He took on cases in which the child’s condition was so severe—heart failure, organ damage, blindness—that surgery could be justified as a last-ditch measure. His results were spectacular. When Linda Shannon, a highway-safety analyst from Albany, sent Waner a photo of her 19-month-old daughter, who had a golf-ball-size hemangioma on her lip, Waner called four days later and said, “I can have your daughter looking normal in two hours.” Shannon flew to Little Rock, and after the surgery she walked past her daughter, unable to recognize her at first. Shannon, who has since founded the Vascular Birthmarks Foundation, and who has referred thousands of desperate parents to Waner, speaks of the doctor in beatific terms: “His hands were anointed by God to help children.”

As Waner’s reputation grew (he published dozens of articles describing his research, and appeared at medical conferences around the world), Alejandro Berenstein, director of Beth Israel’s elite Hyman-Newman Institute for Neurology and Neurosurgery, learned of Waner’s work and felt a kinship. Berenstein had invented methods for treating endovascular ailments like aneurysms by snaking catheters into regions of the brain made visible by high-tech imaging. “Waner and I had the same philosophy,” Berenstein says, “which was to intervene early from the inside, so kids can develop in a more normal fashion. But we were yin and yang. I was doing it with radiology, and he was doing it with surgery. It became obvious to me that the two of us could put together a fantastic program that could do a lot of good for children with facial deformities. We could actually advance the field.”

For Beth Israel, luring Waner to New York to join Berenstein was akin to bringing A-Rod to the Yankees to pair with Jeter. The hospital promised Waner it would create a program around him—the Vascular and Birthmarks Institute of New York—and place significant research tools at his disposal. Waner couldn’t resist the chance to work with Berenstein and his colleagues. He served notice to Arkansas that he would wind down his practice and head to New York in the spring. A few days before Christmas last year, he received an e-mail containing photos of Aslynn Brown.

Waner opened the perimeter of Aslynn’s tumor with exacting slowness. He made a nick of an incision. Blood poured from the opening. He asked for an electrocautery device—a pencil-like instrument that transmits electricity from its nib—and touched it to the end of a blood vessel to stanch the bleeding. Waner repeated this pattern—cut and cauterize, cut and cauterize—dozens of times, until the skin lay across the tumor like a snug flap. A burning smell rose from the incision, along with wisps of smoke. Waner lifted an edge of skin and moved beneath. He was following the precise technique he had developed for removing hemangiomas that others dared not treat: Attack the tumor from beneath the skin, leaving the skin itself intact, all the while plugging the sites of the relentless bleeding. He began looking for a “plane”—a gap between the skin and the tumor that would allow him room to begin cutting off the tumor’s blood vessels. He inched deeper. Rather than a clear plane, though, he found only the equivalent of a murky path through thick brambles. The hemangioma adhered to the underside of the skin. Clumps of blood vessels blocked his way. “When you’re in the wrong plane, it bleeds like there’s no tomorrow,” he says. “You can’t see any separation between normal tissue and the hemangioma. It’s frightening.” Again and again, Waner paused to measure the thickness of the skin flap, to ensure that he remained in the barely discernible opening between skin and tumor. Eventually he reached the top of the hemangioma.

A few moments later, he found what he was looking for: a lane beneath the skin with room to maneuver.

“Okey dokey,” he said.

“As long as you’re not saying ‘Oops,’ ” his assistant replied.

Music played from a boom box attached to Waner’s iPod.

Classic rock: Eric Clapton, the Beatles, the Stones.

Occasionally Waner sang along, but his voice barely rose above a murmur. Having found the plane, Waner was now in control. He moved along the top of the hemangioma, making small brushstroke-like motions with the electrocautery device, cutting through the tumor. He was in a state of rapt attention, oblivious to the presence of others in the room, oblivious to the passage of time or to hunger or fatigue.

He knew his luck would run out soon, that his progress would be halted by the feeder artery that was buried in the mass. He could tell he was close to it. His assistant held back the skin flap with a two-pronged retractor. He made tiny stabs at the tissue. Then, abruptly, he froze. He had glimpsed the artery tunneling through the tumor. He called for a pair of fine forceps, and sliced tissue away from the artery on one side, then the other, picking away at the tumor until he found daylight beneath the artery. He maneuvered a clamp beneath it and shut down the supply line that was fueling Aslynn’s tumor and destroying her heart.

Waner had turned a corner. He was about three-quarters of the way through the eight-hour surgery, but the greatest danger had been conquered, and he could see his way toward the end. He continued to undermine the tumor, at times using a scalpel whose blade was heated to 350 degrees—perfect for simultaneous cutting and clotting. When the threads that had connected the hemangioma to healthy tissue had all been severed, he gingerly scooped the mass out in a single piece. He gazed at it with some bemusement. It was, he thought, the size of a giant South African mango.

Now, with the tumor gone, he went about the task of trimming and molding Aslynn’s stretched skin. He worked like a sculptor, making tidy folds and creases, discarding excess material, building a scar that would flow naturally along the contours of her skull. He began knitting seemingly endless loops of sutures. He worked Aslynn’s bent ear back into shape. For the first time in nearly a year, her head tapered smoothly to her neck. The distended skin was gone. The incision was closed with a tidy seam. The surgery had been “backbreaking,” Waner conceded. Then he stood back to examine his handiwork. “Lovely,” he said.

“Waner knew he was close to the feeder artery buried in the mass. He made tiny stabs at the tissue. Then, abruptly, he froze.”

The Browns returned to Iowa five days after the surgery. The next week, at Aslynn’s 15-month pediatric checkup, her heart murmur was barely detectable. Today, she has begun tapering off her heart medications and is gaining weight. “Aslynn has really come alive,” Jill says. “She climbs all over furniture and dances up a storm.” Hair has quickly grown over her incision, and she betrays no awareness of having had surgery. Unless something unexpected happens, she won’t need any more.

Sometimes Jill forgets that the hemangioma is gone. When she lays Aslynn down to sleep, she finds herself surprised to feel the hardness of Aslynn’s scalp. For the first time, she can fasten the buttons of Aslynn’s shirts around her neck. She and Paul are still adjusting to life as parents of a healthy baby. On trips out of the house, Jill is taken aback by how little attention Aslynn attracts. “We haven’t heard one negative word since we came home,” she says.

Jill has a habit, she says, “of elevating Dr. Waner to the status of God,” but Waner doesn’t like to hear such talk. “I grew up with low self-esteem,” he says. “I’m uncomfortable with adulation.” Still, some facts speak for themselves: No patient of Waner’s has ever died during surgery, and as far as he knows, none of his thousands of patients with vascular abnormalities has ever failed to benefit from treatment.

This much, the doctor will allow: “Aslynn Brown,” he says, “is a perfect child.”

Saving Face