Dr. Marcelo Hochman reached toward Naila Hassan's face and touched the strange growth on her cheek. The 11-year-old squirmed.
"Your hands are so cold," she said, giggling.
Hochman grinned. He had just washed his hands. "But I have a warm heart."
By now, Naila and the longtime Charleston doctor know each other well. She has been coming to Charleston from Dubai with her mother and siblings since she was 2 years old to receive treatment from Hochman. Her country decided an expert in the U.S. was needed to treat the anomaly that has been on her face since she was born.
But that decision came only after a series of doctors in her home country misdiagnosed Naila's anomaly as a hemangioma, a kind of benign tumor. Naila suffers from a condition in the same class of disorder but requires a much different treatment. Hochman identified her disorder as a "venous malformation." She has needed a laser treatment every year since 2008 and will continue to need those treatments for the foreseeable future.
Hochman, a facial surgeon who specializes in these anomalies, said they occur in about 10 percent of live births. Yet they vary widely by severity and the course of treatment they require. Some need no treatment at all. A layman might recognize one kind of vascular anomaly as a "port wine stain," as they are commonly called.
At a recent symposium held by Hochman at the Bon Secours St. Francis Hospital in West Ashley, experts gathered to discuss how research has proven doctors should treat anomalies at ever younger ages so that children avoid even becoming aware there was a problem in the first place.
"It turns out that we can do a lot of things before the kids realize what’s going on about themselves," Hochman said.
There are a handful of centers in the U.S. that specialize in the treatment of pediatric vascular anomalies. The Medical University of South Carolina, of which Hochman is a graduate, has a program for treating the complex disorders. A multidisciplinary team meets once a month to discuss the 15 to 20 new vascular anomaly patients they see every month, said Dr. Krishna Patel, director of MUSC's Facial Plastic and Reconstructive Surgery. She said the team is comfortable treating the anomalies and can provide a number of options.
Hochman said it is important to try to address these problems before children develop social awareness. He said research has shown in the first 18 months, if you put a sticker on a child's face and set her in front of a mirror, she won't recognize herself. But by the time she reaches 18 months, she will not only recognized herself in the mirror, she will reach up and pull the sticker off her face.
"They are developing a sense of perception from the outside," Hochman said.
By the time kids are 3, they will be aware when people are talking about or pointing at them.
Naila, of course, is far beyond that age. But she's not embarrassed, and she's not shy. She will gladly point out her before-and-after photos on Hochman's welcome desk that shows the transformation. In the first photo, the malformation obstructs her lip. In the second, she looks into the camera under a mass of bangs and a flowered hat, the malformation almost invisible.
But that wasn't a permanent fix for her problem. She will continue to need treatment, especially through puberty, which Hochman said can speed along the growth of the malformation.
For American patients, Medicaid and private insurance usually cover at least some of the costs of treatment. Hochman said the out-of-pocket responsibilities sometimes make these treatments unaffordable for some patients who don't have insurance. Hochman said he does his best to negotiate prices for his patients. Naila's treatments work out to be between $5,000 and $7,000, subsidized by the United Arab Emirates.
Her mother manages her care closely. She does not want Naila to miss any school or exams, nor can she wait too long and risk the malformation growing.
"I don’t want to miss even one session," Aisha said.
After years of struggling to find the right treatment, Aisha is resigned to this treatment plan. They stay in a room with the kitchenette in North Charleston for the summer while Naila receives her treatment. Naila has made friends with others staying at the hotel and with Hochman's staff. The treatments, which require anesthesia and involve Hochman wielding a laser, don't phase her anymore. There have been too many to count.