One morning last fall, the 8-year-old sat up in bed at Arkansas Children’s Hospital in Little Rock, sorting through thimble-size models of Spider-Man, Thor and other superheroes he’d stored in an empty Pringles tube.
Holding out a cupped palm full of the characters, he offered a toy to his doctor, Gresham Richter, as a gift.
“He wants you to choose one hero,” Mikhail’s translator, Nazira Khaidakova, told the physician, who selected the Incredible Hulk.
Mikhail was preparing for treatment of a venous malformation. He’s among the international patients from countries such as Israel, Russia, China and Ukraine who have sought help for related conditions at the children’s hospital.
Richter — a professor and pediatric otolaryngology chief at the University of Arkansas for Medical Sciences and Arkansas Children’s Hospital — says his team is one of a few in the U.S. known for work on the group of conditions called vascular anomalies.
“You would probably not suspect you would have an international referral pattern [in Arkansas],” he says, “[but] it’s because of the expertise, and because it’s been supported by the hospital.
“We’re breaking down the barriers here … for them to get treatment.”
Richter says word of mouth, such as through online support groups, has brought a handful of patients from Eastern Europe for treatment with the Little Rock team over the past few years.
While those countries are industrialized, their hospitals and doctors don’t have “the technology, the lasers or the knowledge base” to offer the best possible treatment to patients, he says.
Through the translator, Mikhail’s mother, Mariia Pak, said their journey began when Mikhail was just 4 months old and the family noticed a lesion on his cheek. In photos, it appears as a smudge-like mark — like a grown-up’s thumbprint — creating a small bulge inside his upper lip.
The family unsuccessfully consulted specialists in Russia and Germany before hearing about the Arkansas program, she said. Pak began communicating with Richter’s team with the help of email and Google Translate.
But as they scheduled his first procedure in July of 2019, visa issues cropped up, she said. They’d had to appeal to the Russian Consulate for help, explaining Mikhail’s condition and that they had already paid for his procedures.
With their travel documents sorted out, the family boarded the first of three planes for a 24-hour journey to Little Rock, one of two such trips they’d take this year.
You get pretty connected with the families,” Richter says.
‘Not Like a Cancer’
According to a 2016 article in the journal Cardiovascular Diagnosis and Therapy, about 1-2 of every 10,000 people are born with a venous malformation, in which some veins don’t develop normally.
Structural problems make the veins bulge or expand. Depending on where the malformation is, it can cause swelling, darkened bluish patches on the skin or functional difficulties, potentially interfering with important processes like breathing.
Thought to be linked to a genetic mutation, venous malformations are challenging for doctors to treat, in part because they tend to come back.
“This is not like a cancer that grows within something, and you can take it out,” Richter says. “It’s part of the normal architecture that’s there; it’s part of the normal tissue.”
Richter traces his interest in vascular anomalies back to early research he did on pulmonary hypertension, which can reshape blood vessels in the lungs, as well as his taking part in difficult 30-hour surgeries earlier in his career.
“We were resecting these massive malformations, and they would bleed the whole time,” he says. “I said to myself, ‘There’s got to be a better way to do this.'”
He now uses “multimodal” treatments that can include surgery, laser and drug treatment. In Mikhail’s case, Richter incorporated laser therapy called selective photothermolysis and an injection of bleomycin, a chemotherapy. The dual-pronged treatment should shrink the veins and attack cells to keep the abnormality from returning.
In an operating room, about 10 medical professionals gathered with Richter to assist with Mikhail’s procedure, donning protective glasses as a powerful laser hummed to life.
Richter also directs research at Arkansas Children’s Hospital on vascular anomalies, studies that are concentrated in a small number of U.S. labs, he says.
While experts now have a sense of what genes are linked to venous malformations, he thinks more research is needed to totally eradicate the condition. “I think we probably need another 10 years. … Right now, I don’t think we’re at a cure state.”