The grapefruit-sized tumor draped around Jonathan Ssekawunde’s neck didn’t keep the rambunctious 3-year-old from hopping on tractors for pretend “rides,” darting through a barn and giggling while feeding goats and llamas at Domino’s Petting Farm this fall.
But back home in his village in Uganda, Jonathan wasn’t able to play in public places. There, the protruding tumor marked him as “diseased,” leading to his isolation from other children and even preventing him from going to school.
Today, just a faint, pencil-thin line across his neck is all that’s left of the 18-centimeter neck mass after a surgery at the University of Michigan’s C.S. Mott Children’s Hospital.
“It’s like a miracle,” his mother Jane Nakieremea says through a translator. “He was becoming more aware that he was different from other kids and couldn’t do what they could do. In Uganda, when we tried to get him help, they told us to take him home and wait for him to die.”
The journey to Ann Arbor
Naomi Corera, of Ann Arbor-based foundation “Children Waiting Everywhere,” vividly remembers meeting the high-spirited toddler on a trip to Uganda last year. He sprinted towards her as she passed out balloons at a home for children with disabilities run by the Sisters of the Good Samaritan.
She learned that Jonathan, who was born a twin but whose brother didn’t survive the birth, had a bean-seed sized growth behind his ear as a newborn. As he grew, it grew.
“It was growing larger by the week. It had gotten so big he could almost rest his chin on it,” Corera says. “The sisters told me the good news was that it wasn’t cancer. The bad news was that there was nothing doctors could do to help. I couldn’t accept that.”
So Corera embarked on a passionate quest to find him help, collecting his medical records and bringing his case to Ann Arbor. Jonathan’s story reached Mott pediatric otolaryngologist Dr. Marci Lesperance.
“I had never seen a neck mass this large in my entire practice. Had Jonathan been born here, this would have been taken care of at a much earlier stage,” Lesperance says.
“We were trying to evaluate his case from across the ocean based on very limited information so it was kind of a leap of faith to say ‘come here and we can help you.’ But this size of a lesion required a level of surgical care that only a few centers in the world could provide. If there was any place that could take care of something this difficult it would be the University of Michigan.”
Thanks to Corera’s foundation, donors and a host family, Jonathan was able to take that chance in October. A year after meeting Corera, Jonathan’s mother Jane left her two older boys at home to make the trek to Ann Arbor with Jonathan, along with their translator Sr. Mbabazi Josephine.
Once in Michigan, Jonathan was evaluated by doctors who deemed him otherwise healthy. But an MRI revealed newfound concerns: As suspected from the low position in the neck, the lesion extended down under Jonathan’s chest, displacing his lungs. Although medical reports from Africa suggested that the mass was cystic and filled with fluid, the MRI showed a large solid component that appeared to be infiltrating and invading the deep tissues. These MRI findings raised concern for cancer, which could mean that surgery alone would not be enough.
The family was told that the test results were “unfavorable.”
“We realized it would be a much more complicated case than we had anticipated,” says Lesperance. “We of course had more resources here than the hospitals in Uganda and were able to identify issues we didn’t know about ahead of time. There was a chance surgery was not an option for treatment, which of course would be devastating.”
A new life
Jonathan’s case was reviewed by a team of adult and pediatric otolaryngologists, pediatricians, a radiologist, a pathologist and the hospital’s tumor board. Doctors determined that while still risky, the surgery was possible.
The procedure required five surgeons in the room, aided by an ICU team, pediatric anesthesiologist and hematologist. U-M’s head and neck mass specialist Dr. Matthew Spector started the procedure with a biopsy, which determined that the tumor was indeed benign. He then carefully separated three major blood vessels under the belly of the tumor in order to work around nerves affecting Jonathan’s motor functions like arm movement. Blood volume for Jonathan’s entire 34-pound body was replaced twice during the six-hour surgery.
“The biopsy confirmed the diagnosis and that what we were doing was right for Jonathan,” Spector says. “It went as well as we could have hoped and it was wonderful being able to deliver that news to his mother.
“It was amazing to know he could go back home with almost a new life in front of him.”
Just 10 days after the surgery, Corera traveled with the family back to Jonathan’s village where he was greeted by celebratory songs, cheers and chants during a jubilatory reunion with his father, siblings, friends and neighbors.
“Pure joy. There’s no other way to describe it,” Corera says of reactions in the village. “Jonathan has been given a future. That’s what this journey was all about. That makes everything worth it.”
Take the next step:
- Watch scenes from Jonathan’s surgery and reunion with his family in Uganda in special video “Jonathan’s story”
- Learn more about Children Waiting Everywhere and how you can help
- Learn more about the Otolaryngology team at C.S. Mott Children’s Hospital
University of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.