The hemangioma controversy
Newborn Aslynn Brown was perfect.
Like many new parents, Jill and Paul Brown fell madly in love with their first child. When the baby developed some redness on her scalp, Jill thought it was cradle cap or maybe a rash. At Aslynn's two-week check up, her pediatrician said the discoloration was a birthmark. All concerned thought it was lucky that the mark was in a spot that would soon be covered by hair. Neither Jill nor Paul gave it much thought. Birthmark or not, to them, Aslynn was still perfect.
The word "hemangioma" wasn't mentioned. And no one-not Jill or Paul, concerned relatives, or even the pediatrician-dreamed that the red mark on perfect little Aslynn Brown's scalp would soon grow into a large, disfiguring tumor that would cover much of her head and neck, cause her ear to fold over, and affect her heart's ability to function.
What is a hemangioma?
A hemangioma is a benign (noncancerous) vascular tumor. Hemangiomas generally appear within the first month of life and then tend to grow rapidly for up to nine months. Hemangiomas can occur anywhere on or within the body (some are internal), and are much more common among girls, says Milton Waner, M.D., of Beth Israel Hospital in New York City, one of the country's leading hemangioma experts. "It's believed that hemangiomas are pieces of the placenta that wound up in the wrong places," Dr. Waner adds. "They are very common-about 10 percent of all children have them. Most hemangiomas are tiny." Although the larger hemangiomas (such as the one on Aslynn Brown's head) can cause problems, most doctors-even specialists-are reluctant to surgically excise them.
The treatment controversy
"Revolutions don't come easily," says Dr. Waner of the medical establishment's conservative view of hemangioma treatment. He can tell stories of patients who've lost some of their sight, even become unable to walk. "About 10 percent of hemangiomas require some kind of treatment."
He is scornful of doctors who tell parents that their child's hemangioma is only cosmetic. "They are cavalier. They tell the parents that this thing, which is getting bigger and bigger, will go away, that they should just go home and not worry about it. Now no adult would tolerate this thing the size of a lemon growing on their face. Why should they tolerate it on their child?"
Aslynn's story
"Paul and I were so happy to have a healthy baby that we weren't concerned about the birthmark," says Jill Brown. "I got used to it. I didn't really notice that it was changing."
Jill and Paul, who both grew up in the Twin Cities, met at the University of Minnesota-Morris. They moved to Iowa after graduation and ended up settling there after Paul went to work for John Deere. But home was still the Twin Cities, and they brought their infant home to be baptized. It was at Aslynn's baptism that relatives noticed that the as-yet undiagnosed hemangioma was getting darker and starting to puff up near Aslynn's ear. Jill's mother suggested that they consult a dermatologist.
By the time the Browns got Aslynn in to see a pediatric dermatologist, she was 8 weeks old and the growth was starting to break the skin between the baby's head and ear. The doctor correctly diagnosed the growth as a hemangioma. He told them that it would eventually go away, though it might be awhile-he had a patient who was a second-grader and still had
a hemangioma. Jill asked for testing; she wanted an MRI, to make sure that there was no brain involvement. He said, "We wouldn't put an infant through that."
The next time Aslynn saw her pediatrician, at the age of 4 months, the doctor was alarmed by the size of the tumor and ordered an MRI. Jill and Paul were relieved when the MRI showed that there was no problem with Aslynn's brain. By this time, their daughter was 5 months old and small children were starting to ask innocent questions like "Why did you color her head? Why is her head so big? Why doesn't she have a neck?" Adults would gasp when Jill took off Aslynn's hood.
"I felt bad," Jill relates. "She was a cute, funny baby, but all people noticed was her head." And then, one day, Jill was at the library with Aslynn when a 10-year-old boy referred to her daughter as "the most disgusting thing I've ever seen" and said that looking at her made him sick. Jill said that she had to do something. She couldn't let Aslynn hear something like that.
Jill and her mother-in-law both researched doctors on the Internet. The Browns' insurance would pay for Aslynn to see an Iowa doctor. They set up the appointment; Jill also emailed Dr. Waner, who then practiced in Arkansas and was called the "Arkansas Healer" by grateful parents of hemangioma patients. Jill also mailed Dr. Waner pictures and Aslynn's MRI.
The Iowa doctor said that the hemangioma had grown too large to be treated with steroids, which stop the growth; it had reached full size. He thought they should wait a few years before attempting surgery.
An email from Dr. Waner was waiting for Jill when they returned home. The Brown family drove the 1,200 miles round trip. Dr. Waner's wanted to perform surgery to remove Aslynn's hemangioma. The surgery was scheduled for April.
And then, in December, Aslynn's pediatrician detected a heart murmur. A cardiologist confirmed that the baby's heart was enlarged and that the heart was working hard to pump enough blood to feed the hemangioma. Dr. Waner, who had by this time moved his practice to New York, moved up Aslynn's surgery to January.
When he examined the baby two days prior to the operation, Jill instantly felt calm. "I was so confident in Dr. Waner that I was ready to hand her off to him," she says. He is so revered among parents that Jill felt as excited as though she were meeting a celebrity.
The surgery, scheduled for four hours, took eight. The baby didn't react well to the extended anesthesia, was weak, and swollen with fluid. She was anemic from blood loss. But the tumor was gone.
Today the scar is covered by blonde hair. And there's a little bit of red on the tip of Aslynn's ear. But in all other respects she is a normal, healthy, beautiful 21-month-old.
The only difference now is that everyone can see the beauty that Jill and Paul knew was there all along.
