July 7, 2021 -- A 6-year-old girl who was born with a tumor that never stopped growing revealed her face for the first time after a 12-hour surgery to remove the mass.
Negalem Alafa, from Ethiopia, had the surgery on June 23 at Lenox Hill Hospital in New York City. The difficult operation required facial and neck nerve dissections, followed by a careful removal of the tumor, her doctors said at a news conference.
“Her blood volume is only 1 liter, and you can lose 300-400 milliliters in a minute or two by accidently puncturing these blood vessels,” Milton Waner, MD, director of the Vascular Birthmark Institute at Lenox Hill Hospital, said at the news conference. “This is one of the most complicated procedures we’ve done.”
The benign growth, known as a vascular malformation, rapidly developed soon after her birth. Negalem’s family had no access to medical care, and the girl’s tumor continued to grow in size, eventually making it hard for her to breathe and swallow. If the tumor was not removed, she faced death, her doctors said.
But the young girl’s life was forever changed after a U.S. government official met her while on a mission in Ethiopia and helped Negalem’s family find doctors who could treat her. After a yearlong search, he found Waner and his wife, Teresa O, MD, one of the few surgical teams in the world specializing in complex pediatric vascular malformations.
They agreed to take on Negalem’s case and did the surgery pro bono, while Lenox Hill Hospital and Northwell Health covered all hospital costs and post-surgical care.
“Everywhere she’s gone, her personality has shined,” O, director of the Facial Nerve Center at Lenox Hill Hospital, said of Negalem. “We’ve been really privileged to have been a part of her journey.”
“He is thankful for everything the doctors have done for his little girl,” said a translator for Matios Alafa Haile, Negalem’s father. “He is thanking God for this every day.”