As a physician caring for some of the most deformed spine patients on the planet, we don’t always get the chance to give good news. In fact, one of the most difficult things our team did last year was to meet Selam’s mother.
We knew that 16-year old Selam was a high-risk patient. Without surgery, she would have become paralyzed, for sure.
Let me back up for a moment. Over a year ago, Selam came to us from her home in Ayer Tena on the outskirts of Addis Ababa. As a 4 year old, her mom was giving her a bath and noticed that her back had a bulge. This continued to get progressively worse. She went to many holy water sites, hoping the healing powers of the holy water would cure her and straighten her spine. No help. She had multiple visits to Zewditu Hospital’s neurosurgery department. Doctors there contemplated operating on her, but her mom would not approve. Her mom went to church every day to pray for her daughter. Selam continued to get worse.
Selam continued school without missing a day. But she was teased about her back, and became increasingly self-conscious. She did not get together with friends, she simply went to school and returned directly home.
When she turned 13, her father died of heart disease. This put great stress on the family. Selam became increasingly self-conscious, and stayed inside.
But her life changed. Her mom was in a taxi, and 2 women were talking about a patient who had successful spine surgery – in Ghana. Her mom learned that Dr. Rick was the doctor – and he practices nearby. She brought Selam to our clinic the very next day.
We realized Selam was a critical patient – Her spinal angle was 205 degrees! How is that possible? Her spine is shaped like an alpha! Without dangerous surgery, she was sure to become paralyzed. She was evaluated by Dr. Boachie – he ranked her “1+” – our most urgent rating.
We sat with her and her family and explained the potential benefits – and potential risks. The real risks were paralysis, incontinence … and even death. The family said a prayer, and signed permission. We sent her to Ghana, where she went into traction for 4 months. She improved, and her spinal deformity improved.
But a terrible situation developed – she became traction-dependent! When she slipped out of her traction apparatus, she would become semi-paralyzed! We had never had this happen before. We found no reports of this in the medical literature. An attempt to place her on the operating table without neurologic compromise was not successful.
Dr. Boachie phoned from Ghana, to discuss this in detail. “Rick,” he said, “her family must be informed. They must know that she’s at great risk no matter what we do.
There is a very high risk of paralysis. Her mom must be informed, and her mom must sign permission again – under these circumstances. ” We asked her mom to come in, along with a translator for her native Gurage language. We explained the predicament – Selam can’t stay in traction forever. If she stops traction, she is likely to become paralyzed. If she gets surgery, there’s also a significant chance of paralysis.
At first her mom was against surgery. She wanted Selam to simply return home to Ethiopia, immediately.
“Now she can move,” she said, “who knows about later?” The decision had to be hers, not ours. We phoned Selam in traction in Ghana, and they had a long, private talk.
Her mom returned 20 minutes later: “She needs the surgery,” her mom said, “I’ll sign.” We drafted a document in 2 languages which we read to her mom. Her mom – illiterate – tearfully signed with her thumbprint and a prayer. Then her mom spent several full days in church praying for Selam, asking God “for 1 big favor.”
In late 2015, Selam underwent surgery in Ghana, while still in traction. She had spinal fusion from T1-L1, and removal of 2 bones – T7 and T8. She had thoracoplasty and local bone graft, and a mesh cage put in. She had loss of some neurologic signals during surgery.
But she survived, with some neurologic deficit: after surgery, she needed knee braces and a walker. Selam was determined to walk on her own, and practiced physical therapy for hours a day with amazing determination.
A few months ago, she flew back from Ghana with 10 others. She tearfully embraced her mom at the airport, and proudly and slowly walked on her own with a walker. She has continued to get better.
We phoned her this week, and she said “I don’t have words to explain how happy I am. Sorry, I have to go, I am out with my friends now and they are waiting for me.”