Nagalem Haile revealed her true face to the world on July 6, making it clear she was not the same six-year-old she was last month.
Soon after the Ethiopian native was born, she developed a severe and life-threatening tumor on her jawline. Without access to the appropriate medical care, the growth was able to increase in size, unabated until it became so large it not only affected her quality of life, but it also became potentially deadly with the danger of rupturing and began to hinder her airway. But all was not lost.
Thanks to a government official who embarked on a yearlong search to discover a method of aiding in Nagalem’s plight, they found Dr. Teresa O and Dr. Milton Waner of Lenox Hill Hospital who were two of a few surgeons specializing in pediatric vascular malformations. Nagalem and her father Matios Alafa Haile were flown to New York City in June where she would receive a risky, pro bono surgery mere days later thanks to Lenox Hill and Northwell Health for covering all of the costs and post-surgical care.
Hailing from rural Ethiopia, the bright lights and towering skyscrapers of Manhattan was a big culture shock to the father-daughter duo, preventing the pair from sleeping their first night in a hotel room brimming with strange devices. Yet Matios stood steadfast with the ultimate goal of not only transforming his daughter’s life but also saving it. He was told that the 12-hour surgery had the capacity to lead to complications that could result in death. However, if the tumor remained, the future looked just as bleak.
“This type of surgery is very difficult, very dangerous and certainly life-threatening,” Dr. Waner said, adding that although it was complex and potentially dangerous, the procedure went very well.
Following half a day in surgery, Matios’s first question to the doctors was, “Is my daughter still alive?” Upon answering yes, Matios fell to his knees, thanked God and the surgeons after the procedure was a success.
On Tuesday, at a press conference, Nagalem and her father joined with the life-saving doctors to show off her smile. The face reveal began with Nagalem clutching the microphone and saying, “Thank you.”
Dr. Robert Rosen, a Northwell Health physician who specializes in Vascular, Interevent Radiology, Diagnostic Radiology and Cardiology explained that Nagalem’s tumor was a spongy mass filled with entangled vessels. It is a rare disorder, he described, but it’s a procedure the facility has experience treating.
“My role in this particular situation was to treat the malformation with a procedure called embolization where we intentionally clot off these spongy venous spaces and create the bloodless field for Dr. Waner and Dr. O to begin to remove,” Dr. Rosen said.
Dr. Waner took reporters through the surgical process, highlighting that the mass had adhered itself to Nagalem’s jawbone, causing it to become misshapen and also shift her cheekbone. In order to avoid facial nerves and arteries, the incision took a great deal of plotting.
“We really went at it inch by inch, kind of step by step because it was very vascular,” Dr. O said, adding, “Fortunately her facial muscles were all intact and not involved with the venous malformation so that was a great thing.”
While the mass was successfully removed—weighing up to a pound—there will still be several weeks to months of swelling post-surgery and further reconstructive surgeries down the line. Nagalem is scheduled for another procedure on Wednesday.
“So, on a scale of 1 to 10 this is a 12. It’s very, very difficult and complicated. In fact, one of the most complicated procedures we’ve done,” Dr. Waner said.
Dr. O agreed, adding that the only other complicated case like Nagalem’s they’ve seen was from Morocco.
“In America, we almost don’t see something this large because children get looped into care early,” Dr. O said.
Matios reiterated his thanks to the doctors, praising them for saving his daughter’s life. He shared that on the day of surgery he held his daughter and prayed as she underwent anesthesia.
“I was crying before but now I’m smiling so thanks to God,” Matios said, adding, “She is like different after surgery. She is playing enjoying everything outdoors. There is a big difference. May God bless the doctors without them this wouldn’t be like this.”