Soon after Nagalem Alafa was born, a mass began growing on her face. The now 5-year-old had a vascular malformation, where blood vessels snarl like overgrown vines. It became so large that doctors worried it could suffocate Nagalem or that swallowing would become impossible. If Nagalem fell and cut it while playing, she could hemorrhage. Living in a village in Ethiopia meant she struggled to access specialized medical care to have it removed.
But doctors at Lenox Hill Hospital and Northwell Health gave Nagalem and her family hope for her future when surgeons successfully removed the vascular malformation during a challenging 12-hour surgery.
“On a scale of 1 to 10 this is about a 12, very, very, very difficult and complicated. In fact, it’s one of the most complicated procedures we have ever done,” Dr. Milton Waner, director of the Vascular Birthmark Institute of New York at Lenox Hill Hospital, said at a press conference this week. “The reason is the sheer size of this and the size of these blood vessels.”
Waner said Nagalem only had about 1 liter of blood whereas adults have about 5 liters. Any nick to the vessels in the malformation could cause Nagalem to start bleeding profusely. She could lose as much as 300 to 400 milliliters of blood in minutes.
“Puncturing them is very easy because you’ve got to gingerly dissect around these vessels and take them off the jawbone. They were inherent to the jawbone,” Waner explained. “Every millimeter is perilous. So it’s very, very difficult.”
Because the malformation had grown into the bone, doctors needed to rebuild part of Nagalem’s face.
“(The bone) was very spongy so we shaved it down as much as we safely could and reconstructed it with a little bit of a dermal substitute over the bone as well as an abdominal fat graft to give a little bulk to the cheek,” Dr. Teresa O, director of the Facial Nerve Center at Lenox Hill Hospital, said during the press conference.
Still, the doctors had to perform the surgery — they worried that Nagalem wouldn’t survive without it.
“It is not a benign venous malformation,” Waner said. “As she grew, this would get bigger and bigger and eventually would become incompatible with life.”
O agreed, adding that “a small cut on the playground,” could have resulted a in devastating injury for Nagalem.
Since undergoing the surgery, Nagalem has become more confident and is flourishing.
“Everywhere she has gone her personality has shone through and we’ve been really privileged to be a part of that journey,” O said. “She’s really rambunctious, endearing … Her personality almost shouts at you. She almost says nothing, right? But she’s curious. She learned to high five.”
Next week, Nagalem will have another procedure to remove a small portion of the mass that remained nestled under her tongue. When she arrives home after that procedure, her life will look like that of any 5-year-old's, without fear that the mass might harm her. As the months pass, the swelling will continue to lessen.
Through a translator, Nagalem’s father, Matios Alafa Haile, praised the surgeons for saving his daughter.
“God bless you. Without you guys it wouldn’t be like this,” he said. “Thank you so much.”
Waner felt honored that he could make such an impact.
“I became a doctor to help people,” he said. “Clearly, we help people every day but this was on such a grand scale.”
“Milton said, ‘You know this is really a surgical triumph,’” O said. “It sounds really grand to say it that way, but it was a really, really challenging, difficult case. It was very rewarding and the good news is that everything worked out and all the pieces came together.”