Marianna Tamm traveled the world for 11 years, frantically looking for a surgeon to remove a rare and benign vascular tumor on her son’s face. She sought out doctors in her native Estonia, and in Russia, Austria and Finland, all of whom were stumped. It wasn’t until a doctor from the Boston University School of Medicine recommended a team at Roosevelt Hospital that her search ended happily in New York.
“My son is the love of my life,” said an emotional Tamm through an interpreter, as she nervously awaited the start of 12-year-old Georg’s two-day surgery last week. “I am very grateful we found the best hands.” Those hands belong to interventional neuroradiologist Dr. Alejandro Berenstein and pediatric facial surgeon Dr. Milton Waner — who began their unique collaboration in 2004 treating complicated blood vessel problems of the brain, face, neck and spine. Together they have done more than 1,200 procedures on 550 patients from more than 50 countries.
Georg, an adorable blond-haired, green-eyed sixth-grader, was born with a glomovenous malformation, a purple cobblestone-like swelling under the skin that has grown to cover most of his left cheek and eyebrow. The tumor is filled with millions of blood vessels below the skin — compared with just 10 or 20 blood vessels in a normal face. In addition to distorting his left cheek, if he were in a car accident or got hit in the face playing sports, doctors say he could bleed to death.
Before the brave and shy boy was wheeled into surgery, he said he was looking forward to playing basketball when he gets better, and “seeing my cat, Thomas,” as he showed a reporter a funny video of his gray-and-white pet on his iPhone.
Asked if he was nervous, he smiled, and said, “No.”
“The impact of this surgery on a child’s life is huge,” said Berenstein, whose office is adorned with holiday cards and pictures from kids whose lives he has changed. “Not just medically, but the quality of their lives.” Tamm, footing the bill for the $50,000 surgery, is staying at the Ronald McDonald house in Manhattan until Jan. 8. The boy’s drainage tube and stitches are expected to be removed later this week, and the mom is sticking around in case there are complications.
Georg has cried many tears over his facial disfigurement, and he is weary of the stares he gets in public. “I even had to switch his school,” said the single mom, who runs a fish-export business. “It was not the children who teased him, but some of the teachers couldn’t accept him.” Marianna says her son has cried many tears over his disfigurement.. “I even had to switch his school,” said the single mom. “It was not the children who teased him, but some of the teachers couldn’t accept him.”
On Wednesday morning, Berenstein spent more than two hours delicately inserting 40 tiny needles into Georg’s cheek as the boy lay anesthetized in the high-tech operating room. It is delicate work, making sure the needles do not injure the facial nerve, which could cause paralysis or other damage. Once a needle was inserted, Berenstein injected a fluid that hardened and dried up the blood vessels. This minimally invasive technique that Berenstein pioneered cut the blood supply to the tumor, and reduced bleeding when Dr. Waner’s scalpel did the crucial surgical excision on Thursday.
It took Waner less than four hours to complete his portion of the high-wire repair, assisted by a team of eight others, including medical assistants who mapped and monitored Georg’s facial nerves on a computer screen. “One of the problems of operating on these children is they can lose their entire blood volume in a couple of minutes — that is why no one wants to touch them,” said Waner. “We are one of the few dedicated teams in the country that have lots of experience with this.”
Emerging from the operating room Thursday afternoon, Waner was happy with the results. Georg Tamm’s surgical team included Drs. Milton Waner (l.) and Alejandro Berenstein. Georg’s mother Marianna Tamm looks on. “The mass in front of his ear is gone, 90% of the vascular malformation is gone. All he will need in a few months from now is a laser treatment to hide away some of the scars,” said Waner. “Next week, when the stitches are out, when Georg looks in the mirror, he will see a handsome young man.”
The patient’s mom was equally thrilled.
“It looks amazing,” said a tearful Tamm, surveying her only child’s swollen face as he romped in the hospital playroom just 24 hours after the surgery. “This is the most wonderful Christmas present.” As Georg prepared to leave the hospital to go to the Ronald McDonald House on Saturday, he was already looking forward to his return to the Big Apple. “This (medical problem) has been going on my whole life,” said Georg, who wants to be an architect when he grows up. “I am anxious for this to be behind me, so I can come to New York and be a regular tourist without going to the hospital. I love this city!”