Life-changing surgery offers hope for toddler with debilitating facial birthmark

An Ohio toddler whose three-year fight against an abnormally large birth mark that caused her heart to slow and her blood pressure to drop is improving after surgeons successfully operated on the mass, called a hemangioma, in December.

Brianna Brewer’s recovery is in large part thanks to her mother, Holliana Lockhart, who haphazardly posted about her daughter’s condition on Facebook, and Dr. Linda Rozell-Shannon, president and founder of the Vascular Birthmarks Foundation (VBF), who took notice. Brianna’s struggle began when she was only 2 weeks old, at which point Lockhart noticed a birthmark developing inside her daughter’s mouth.

Two weeks later, doctors at Nationwide Children’s Hospital in Columbus diagnosed Brianna with an Infantile Hemangioma and placed her on propranolol to halt the mark’s growth. Lockhart and her husband, Robert, had been petitioning for their daughter to undergo surgery to remove the hemangioma, but doctors resisted due to Brianna’s age and the delicate nature of hemangiomas.

According to VBF, about 30 percent of hemangiomas are visible at birth, while the remaining 70 percent present one to four weeks afterward. About 83 percent of these birthmarks appear on the head and neck area, with the average growth period of up to 18 months. According to VBF, regression of hemangiomas, a process known as involution, can take between three to 10 years.

“Even at two weeks, it was twice the size it should’ve been, but at her age, it had complications,” Lockhart told FoxNews.com. “Her heart could slow down; her blood pressure would drop so low, she would pass out.”

An early hospitalization resulted in a dose of propranolol every six hours and follow-up instructions to monitor Brianna for blue lips, slowing heart rate or any other symptoms that could be related to the birthmark, as well as strict instructions not to administer the medicine in case of an illness.

“In the beginning, we saw a lot of improvements, it looked like it had shrunk from the time she was in the hospital, but the problem was she was sick,” Lockhart said. “In southern Ohio, it gets cold during winter, and I have two other children— we passed the plague around all the time.”

Without the medicine, Brianna’s hemangioma grew at a rapid pace, undoing all the progress propranolol had made, Lockhart said. Meanwhile, Brianna was missing growth milestones due to the hemangioma’s size. Her mouth was so swollen that her top teeth couldn’t come in, and she formed an under-bite. She also struggled with speech because her lips couldn’t properly close, and she struggled to fit a spoon in her mouth during feedings.

Lockhart said doctors left Brianna’s surgical fate in the opinion of a pathologist, who determined  development delays— not the hemangioma— were the source of Brianna’s struggles. Lockhart sought to enroll Brianna in an early education program believing that if she had developmental delays, early intervention would help. During a tour of the school, Lockhart said an incident with another child who reacted negatively to Brianna’s appearance left her in tears and she sought support from a Facebook group.

“I made a post [on Facebook]. I said if this boy said that, then what would others at head-start say, and I can’t be there to pick her up,” Lockhart said.

Rozell-Shannon, who grappled with doctors for years over treatment for her daughter’s hemangioma, saw Lockhart’s post and intervened. Through her foundation, Rozell-Shannon arranged an appointment between Brianna and Dr. Chad Perlyn, a pediatric plastic surgeon at Nicklaus Children’s Hospital in Miami, Florida. On Dec. 7, 2016, Brianna became the foundation’s 100,000th patient, with the family’s medical and travel expenses covered by VBF and the Frank Catalanotto Foundation. Catalanotto and his family are honorary chairs of VBF, and became involved with the foundation’s work after their daughter Morgan was diagnosed with a hemangioma in 1999.

“We are an orphan disease, even though we are the most common birth defect in infants,” Rozell-Shannon told FoxNews.com. “Because 90 percent [of hemangiomas] go away, the 10 percent I deal with are ‘insignificant,’” she said, quoting some doctors.

Rozell-Shannon has assembled a team of surgeons affiliated with VBF who perform the 90-minute outpatient procedure on hemangioma patients after an initial consultation. The VBF website also provides information for parents and doctors of patients with hemangioma, as well as outlets for support.

Less than a month after the surgery, Brianna’s speech has improved, and the swelling continues to subside. Lockhart said Perlyn predicts she will not need another surgery and her lip should return to normal size.

“Brianna’s story is one of the many that provide hope to young patients with vascular formations,” Perlyn said. “I am confident that this surgery will not only improve her physical development, it will also offer Brianna and her family a better social and emotional quality of life.”