For years, 17-year-old Yonatan couldn’t sit or lie on his back. Even breathing was difficult. Now, after an extraordinary and first-of-its-kind operation at Tel Aviv Sourasky Medical Center, he finally has hope. This is the amazing story of Yonatan and his family.
Yonatan,17, suffered from a deformed spine for many years. When he was only 18 months old, he was diagnosed with "local cervical dystonia" and over the years began to develop a significant deformity in his neck which greatly impaired his quality of life.
In the last six years, the situation worsened and he couldn’t sit on a chair or lie comfortably on a bed. The condition worsened when his trachea was blocked, and he had to undergo a tracheostomy so that he could breathe.
In this depressing situation, Yonatan and his family went to Tel Aviv Sourasky Medical Center where they first heard about surgery that might help him get his life back. The problem was that the surgery was very complex, had never been done in Israel and there was no guarantee that it would work.
Dr. Amit Segal, a specialist in the treatment of spinal column disorders in the Department of Pediatric Orthopedics at Dana Children’s Hospital in Sourasky, mentioned surgery in his first conversation with Yonatan and his family and explained to them the uncertainty about the success of the treatment.
Later, after not finding a case description that matched Jonathan's condition in medical literature, Segal and other Sourasky doctors completed a series of consultations with other hospitals in North America, Europe, New Zealand and even Saudi Arabia. None of these medical centers had performed an operation like this.
They were at a loss
In such a situation, it’s quite difficult to decide on surgery, but Yonatan and his family felt that there was no other option. The disease started to take over his life from the age of 11 when his head tilted back and distorted his entire spine. Yonatan is an excellent student and gets high grades, but unlike all the other students, he couldn’t sit on the chair in the classroom at school. The distortion also prevented him from sleeping on his back.
One of his parents said that they "would look at him as he was folded like a baby on the bed and my heart was torn to pieces. The peak was when the deformity in his back caused his trachea to be blocked. He was in real danger of death. We were at a loss because all the treatments and medications my son received didn’t help.”
Yonatan’s family and the medical staff at Sourasky understood and felt that Yonatan's life couldn’t continue this way. "Thanks to the mobilization of a multidisciplinary medical team that included the Department of Pediatric Orthopedics, anesthesiologists, specialists in pediatric intensive care and the adult spine department, we were able to offer Jonathan treatment," Segal said after the surgery.
Segal added that the medical team developed a surgical plan that included lengthy preparation for six weeks in hospital in which Yonatan underwent a gradual stretch in his back by weights tied to his head in a special unit. The surgery was very challenging at all stages. Even laying Yonatan on the operating table and finding the appropriate position in light of the deformity in his back wasn’t easy. Dr. Segal added that “the operation lasted about 10 hours during which a bone graft was removed from his leg that was used for a spinal transplant to create rapid fusion between the vertebrae. We then inserted screws in the skull and planned vertebrae using a navigation system starting with the upper vertebrae in the neck. In the final stage, we corrected the deformity and fixed the spine and skull in the new position.”
‘I smiled again’
In this rare and complex surgery, doctors were able to correct the deformity, align the spine and allow Yonatan to resume normal daily activities that most of us do, without thinking, every day.
For Yonatan, there’s a long rehabilitation path full of hurdles. Segal believes that with Yonatan and his family's determination and the continued efforts of the medical staff in the hospital and in rehabilitation, he will be able to stand on his feet again and walk upright.
When Yonatan woke up from the surgery and recovered, there wasn’t anyone who remained indifferent to his appearance. Finally, after six years he could sit on a chair and sleep a good, quality sleep on his back.
"The smile came back to my face after so long I was restricted in movement and hopeless. I could sit back and lie down like any other person," said Yonatan. He added that he feels more optimistic and happier than ever, and he’s determined to persevere and invest in the rehabilitation ahead of him so that he can go and fulfill a big dream, to see his favorite soccer team Real Madrid play abroad. He’s looking forward to standing and jumping with enthusiasm.