April 5, 2017

Scary start, happy ending

After being treated for 'innumerable' tumors on her liver, a baby girl and her family look forward to the joys of an ordinary life

Not even the sniffles can slow down little Willow Flaherty. She and her identical twin sister, Hazel, are babbling happily and showing off their new crawling skills. It’s a delightfully ordinary scene for the two, who got off to a rocky start—especially Willow.

Had she been born just a few years ago, her future might have been grim. The tiny red dots that appeared all over Willow’s body soon after she was born mirrored tumors that covered her liver, and had she not been treated swiftly, she might have faced a liver transplant, or worse.

The Flaherty twins were born six weeks premature and spent their first two weeks in the neonatal intensive care unit at University of Minnesota Masonic Children’s Hospital. After they came home, their parents, Courtney and Jim Flaherty, began noticing little spots on Willow’s hands and belly.

These small spots were infantile hemangiomas: small vascular tumors that can be harmless, but when more than five appear on a newborn’s skin, it’s a clue that there may be hemangiomas on the liver as well.

Untreated, liver hemangiomas can lead to serious complications—thyroid dysfunction, heart failure, or even death. University of Minnesota Health pediatric dermatologist Sheilagh Maguiness, M.D., an expert on vascular lesions, was aware of the potential consequences and ordered an abdominal ultrasound. Indeed, the care team found “innumerable” tumors on Willow’s liver.

Maguiness recommended starting Willow on propranolol, a medication that, a decade ago, was accidentally found to dramatically shrink hemangiomas. At the time, the Flahertys didn’t fully grasp what a dangerous bullet they were dodging.

“Thank goodness [Maguiness] did a really good job of downplaying how bad it could have been,” Courtney Flaherty says. “She helped keep me calm.”

The medication, a liquid Willow took three times daily, yielded almost immediate results with negligible side effects; within two months, her liver hemangiomas were almost gone.

In March, the twins’ parents celebrated more than the girls’ first birthday: Willow also took her last dose of propranolol.

Maguiness, an assistant professor of dermatology at the U who is studying the co-occurrence of infantile hemangiomas with other birthmarks, emphasizes the importance of raising awareness among pediatricians about infantile hemangiomas, especially when they are large, on the head and neck, or many. She calls propanolol’s effectiveness in treating all types of hemangiomas “game-changing.”

“Before propranolol, mortality was as high as 28 percent with diffuse liver hemangiomas,” says Maguiness, who codirects the interdisciplinary Vascular Lesions Clinic at the U. “Now, with regular screening and appropriate therapy, there are no deaths. It’s a story with a very happy ending.”


Share This

Related Stories