By Lorna Benson, Minnesota Public Radio
A 20-year-old Ethiopian woman is recovering at a St. Paul hospital after having a massive tumor removed from the base of her brain and face. Her case is remarkable because of the disfigurement the tumor caused. As the mass slowly grew over many years, it forced its way out of the woman’s head through her right eye socket. Numerous doctors declined to treat her because her case was so severe and complicated. But a fortuitous meeting between two doctors at a Twin Cities synagogue last fall changed her fortunes.
St. Paul, Minnesota — Dr. Rick Hodes first met Merdya Abdisa a year ago, when she wandered in to the Catholic Mission where he works on behalf of the American Jewish Joint Distribution Committee in Addis Ababa. Hodes is an internal medicine doctor who has lived in Ethiopia for 20 years.
His practice is filled with patients suffering from ailments that have gone untreated for far too long. But he had never seen anything like Merdya’s tumor.
“It’s deformed her face. She has to cover half of her face. Her eye is popped all the way out. It’s really quite unnerving to see it,” said Hodes. “And for the last three years she’s basically been inside, because she doesn’t want to walk on the street because people are afraid if they see her.”
Even Hodes’ description doesn’t quite capture the way Merdya’s face was deformed. A cone-shaped mass of skin protruded from her right eye socket. Her eyeball rested at the tip of the cone. She was unable to close the eye because her eyelid was too stretched out.
Hodes was deeply moved by Merdya’s plight. He immediately began sending photos of her to brain specialists, asking if they could help. He contacted at least six world-renowned neurosurgeons without success.
“They all throw up their hands and say, ‘Oh my gosh, I’ve never seen anything like it.’ And that’s it. That’s like the end of the story,” sayd Hodes. “It was very frustrating for me, knowing we could potentially save her life. But it was a great challenge because nobody was interested in helping her.”
During a fundraising trip to Minneapolis last November, Hodes said God led him to a doctor who could help Merdya.
An observant Jew, Hodes intended to wake up early and attend morning prayers before his fundraising meeting. But his alarm clock didn’t go off. So he delayed his prayers and went to the synagogue after his meeting.
It was so cold outside that he brought his laptop with him into the synagogue. That’s where he ran into Dr. Eric Nussbaum, who was studying with a rabbi.
“When I heard this guy’s a neurosurgeon I said, ‘Oh, let me show you the type of neurosurgery that I deal with. These are my challenges.’ And I opened up the computer and I showed him these pictures of Merdya,” Hodes recalled. “And he said, ‘Oh my gosh. I’ve never seen anything like this.’ But then he said one sentence that nobody else has said. He said, ‘I’d love to try to help this lady.'”
Nussbaum directs the National Brain Aneurysm Center at St. Joseph’s Hospital in downtown St. Paul. Merdya’s case is exciting for doctors in the U.S. because they never see this kind of extreme deformity, Nussbaum says. That’s because even patients with no money would have access to care long before a tumor could inflict this kind of damage.
Nussbaum was willing to attempt what many other doctors had declined to do, because he knew he could assemble a top-notch team of specialists to help him with the surgery — including some doctors who are competitors from other hospitals.
It’s doubtful that one neurosurgeon alone could have handled a tough case like Merdya’s because her tumor formed in a tricky area at the base of her brain, Nussbaum says.
“Problems with the tumors in that location, or any abnormality in that location, is that it tends to cross disciplines between physicians of different sub-specialties,” said Nussbaum.
For Merdya’s surgery, Nussbaum recruited a cranial-facial plastic surgeon from nearby Region’s Hospital, and a neuro-opthamologist from the University of Minnesota to reconstruct the area around her right eye.
All of the surgeons agreed to do the work for free and St. Joseph’s Hospital didn’t charge for time in the operating room.
Money never factored into the decision of whether or not to help Merdya, Nussbaum says. She would have died without the surgery as the tumor put more pressure on her brain.
“In addition to the potential medical issues, you just look at a young woman who is so disfigured and have to kind of feel for her, and what it must have been like growing up with that,” he said.
Merdya Abdisa’s life has not been easy. She is an orphan with no job. She depends on the good will of others to survive.
Her trip to America has been exciting, but also overwhelming at times. She took her first plane ride, stepped on an escalator for the first time, and is now recovering in a hospital where almost no one but the interpreter speaks her native Oromo language.
The day before her surgery, Merdya sat quietly in a chair in her hospital room. The soft-spoken woman hid half her face with a scarf as hospital workers filtered in and out of her room. She cooperated and even smiled, but tears would occasionally fill her good eye.
She wanted the surgery and was grateful to get it, Merdya explained. But she also felt alone being so far away from home. It’s a feeling she has felt many times even in Ethiopia because of her deformity.
She spoke through Oromo language translator, Fowzi Hassan, before her surgery.
“(I was) unable to go to school because of this problem; shame and not going out in public without me covering (my head), a lot of questions.”
She wasn’t able to marry because of her tumor, Merdya says. She will leave it in God’s hands to determine what her life will be like once she returns home, she says.
From her surgeon’s perspective, her life should be much better. The tumor turned out to be cancer-free and the reconstruction went “spectacularly well,” Dr. Nussbaum said the day after the procedure.
“It was very dramatic. The people who were working in the recovery room, the interpreter who was working with her immediately before surgery and then was back with her after surgery, people were really just shocked, which was great,” said Nussbaum.
Merdya’s result should not only alter the way others perceive her, Nussbaum predicts it will change the way she perceives herself.
Merdya will spend several more weeks in Minnesota recovering from her operation. She will stay with an Oromo family until she is well enough to return home to Ethiopia.