Lauren’s Ugly ‘Boo-Boo’ Spurs a Quest for Help

LITTLE ROCK, Ark. —  Strangers can’t help but stare.

Sometimes they even intrude. “My God, what’s wrong with your child?” they say.

The doctors say surgery at this age would be too dangerous, blood loss too risky, that maybe the spongy mass of tissue growing between her eyes would go away on its own.

Lauren is 2 1/2 and the mass has swelled to the size of a lemon. She shies away from mirrors. Children call her a monster.

Jeanette and Glen Dillow are medical nomads, scouring the Internet and medical research material in search of a cure for the deformity. This is their little angel. How could they accept it when doctors say, “There’s nothing we can do”?

In a couple of hours, they will know if they’ve found the right doctor. Or if their daughter’s face will always evoke pity.

Lauren was born a healthy 7-pound, 6-ounce baby 2 1/2 weeks’ premature. She is Jeanette and Glen’s first child.

Several days after birth, a dime-size red mark appeared on her forehead.

By the time Lauren was 5 months old, the red mark began to protrude like a tumor. It looked like a third eye. A four-month cycle of steroids failed to control it.

“We think she’s gorgeous, but we’re parents,” Jeanette said. “Every time you go out, you get different reactions--fear, pity, shock. I always have to explain to kids and parents that it’s not contagious.”

Strangers in the grocery store have accused Jeanette of child abuse. She and Glen are bombarded with questions: “What have you done to your child?”

“It’s always there,” she said, “all the time, like a constant underlying stress.”

Doctors diagnosed the mass as a hemangioma, a ball of tissue and blood vessels growing just under the skin. It’s actually a type of birthmark that grows out of control like a tumor as cells divide rapidly, filling the mass with blood.

The word is derived from hemangio, meaning blood vessel, and oma, meaning tumor. According to recent studies, one in 10 children will have a hemangioma, but rarely as dramatic as Lauren’s.

In her case, doctors said it would eventually go away without treatment.

Lauren refers to it as “my bump.”

“She asked once if this is going to grow as large as an elephant’s trunk,” Jeanette said.

The mass eventually began obstructing Lauren’s eyesight. Jeanette and Glen worried that it might soon affect her mental development, and that as she became more aware of its presence, it could have long-lasting psychological effects.

“Kids were beginning to respond to her badly,” Glen said. They’d say, “Oh, look at the monster.”

Jeanette and Glen couldn’t wait any longer and began seeking a doctor who would remove the mass. What they found were pockets of physicians around the country, most of whom would not operate on a child this young for fear of massive blood loss.

They eventually found Dr. Milton Waner, a pediatric ear, nose and throat doctor and facial plastic and reconstructive surgeon at Arkansas Children’s Hospital.

“It’s a very unique surgery,” said Waner, one of a few doctors in the world who will do this type of procedure on a child under age 3. “People are concerned. . . . They’re worried about the child bleeding to death on the table.”

Ten years ago, Waner said, “Lauren would not have been able to find anyone to operate. She would’ve waited four or five years, and eventually someone would have done something to make her look more normal.

“But by the time she was 6 or 7 years old, she’d have pretty severe psychological trauma,” Waner said. “She’s starting to develop self-image. . . . She knows she has a problem.”

It’s 7:30 on a rainy October morning at Arkansas Children’s Hospital. Jeanette, Glen and Lauren are in a crowded waiting room just down the hall from where a surgeon will work to change Lauren’s life.

“I just have to keep moving,” Glen says, pacing as nervously as a new father.

Awaiting her turn in the operating room, Lauren wanders over to a little girl with a hemangioma slightly smaller than hers.

“You have a little boo-boo, too,” Lauren says, smiling.

She turns to her dad.

“Da da, I want to go home,” she says.

“We’ll get there soon, but now we’re having a big adventure,” Glen replies.

“Somewhere under there is a very pretty girl,” Glen whispers to Jeanette. “She must just be a little bombshell under there.”

“I’m a little bit nervous that when the unveiling does arrive, I won’t recognize her,” Jeanette says. “It’s going to be like seeing a whole new face in front of me.”

In the operating room, Waner cuts carefully around the red mass with a fine inch-long blade. His goal, he says, is to leave no mark, maybe a hairline scar.

To limit blood loss, Waner has perfected his craft using various methods of injecting adrenaline into the site and cutting carefully with a heated blade and a laser that seals off blood vessels and limits scarring.

He performs about 500 of these surgeries a year.

“She may lose about 3 tablespoons of blood,” Waner says.

For about 90 minutes, Waner snips and cauterizes, then pulls the hemangioma free. Lauren has lost less blood than expected.

Jeanette comes into the recovery room alone.

She wears a silver angel on her shirt collar.

“Look at my baby,” she says, tears rolling down her cheeks.

She picks Lauren up from the bed--the child is still sleeping--and settles into a rocking chair, cradling Lauren in her lap.

“She looks so beautiful,” Jeanette whispers. “She looks like a different little person. . . . She’s just beautiful.”

Glen comes in and drops to his knees in front of them. He strokes Lauren’s cheek and blond hair.

“I’ve never seen her before,” he whispers, smiling through his sobs.

“It feels like the day she was born,” Jeanette says.

Waner boldly tells parents, “I can fix your child.” When asked if the procedure is risky, he replies, “Not in my hands.”

The Dillows liked Waner’s confidence.

The surgery isn’t cheap. It can cost from $15,000 to $40,000, but the hospital has a special fund to help pay for those who cannot afford it. And Waner has been known to waive his surgical fee.

“I don’t want people to struggle, so if they can’t afford it, we’ll find a way to help them,” Waner said. “We’ve never turned a child away.”

He says it took five years to perfect the surgery.

“It’s all self-taught,” he said. “I was always fascinated by things that have never been done. . . . I don’t like to work in the box.”

Waner went to medical school in his home country of South Africa. He spent three years in Australia at the University of Sydney, practicing and researching the surgery he would later perfect before coming to Arkansas in 1989.

Waner says he worked with a physicist in Sydney to develop a special laser that limits scarring. The initial laser that physicists working under him continue to advance came from an unlikely source. It was a copper-vapor laser used in bombs.

Waner says he sought out the inventor for help in modifying the laser for use in surgery. He now has a team of physicists helping him develop even more advanced lasers.

Their motivation comes from the very people who need their help.

“We can land people on the moon, surely we can do something to fix my child,” Waner recalled one frustrated parent saying to him.

“No parent accepts no for an answer,” he said.

And Waner is trying to find the cause of hemangiomas.

“Once we really understand where they come from, then maybe we can stop them,” Waner said. “That’s the dream.”

Back at home in Cedar Hill, Texas, the Dillows can’t take their eyes off their daughter’s cherubic little face. The scar is barely noticeable now and, in a year or so, after a few laser treatments, it should be virtually invisible.

There are no stares at the grocery store, no more invasive questions from strangers.

Lauren “tells people that her bump is gone,” Jeanette said. “She says, ‘I went to a special doctor and he fixed me.’ ”