Daisy Villena never thought a news report would change her only child’s life.
Chinno’s son suffers from severe congenital kyphoscoliosis. All the vertebrae in the spine are fused together, leaving the person with a misshapen back and shoulders. Inside the body, vital organs such as the heart and intestines are struggling, and they are unable to participate in physical activity. She is self-conscious and shy, hiding her spinal deformity with a backpack.
Villena has spent years trying to get treatment for Chinno in her native Philippines, but to no avail. He had surgery at age 7 to try to put a rod in his spine, but surgeons found his bones too soft to support the titanium piece. Later, doctors recommended a brace but what he said was a “lack of attention and resources from the treatment team” meant that Villena and her son “never had the chance to pursue that route.”
In 2019, Villena saw a CNN story about a teenager whose extreme scoliosis had been treated by New York City surgeon Dr. Lawrence Lenke, co-director of Och Spine Hospital at NewYork-Presbyterian. Frustrated with her now 10-year-old son’s struggle to receive treatment, Villena decided to move to the United States and seek treatment with Lenke.
Daisy Villena
“With each visit with the doctor in the Philippines, I realized that the case would not be treated or handled properly,” Villena said. “I prayed and set a goal to go to the US to find a specialist who could help straighten my spine and find new hope.”
Is kyphoscoliosis congenital?
Scoliosis and kyphosis are both conditions that cause the spine to curve, with kyphosis bending the spine from front to back and scoliosis bending from side to side. Kyphoscoliosis occurs when people have these conditions together, said Dr. Joshua Bakhsheshian, a neurosurgeon at the Mayo Clinic who focuses on spinal deformities and was not involved in Chinno’s treatment.
“This is one of the most severe types of deformity,” Bakhsheshian said. “It is also one of the most difficult to treat with good results.”
In addition to the roundness or hunching of the back that Chinno experienced, people with kyphoscoliosis may have “decreased” lung volume and a “severe impact” on their overall cardiovascular health, Bakhsheshian said. The condition can also compromise a person’s spinal cord.
Morgan Stanley Children’s Hospital NewYork-Presbyterian
Everyone has some kyphosis, says Dr. Juan C. Rodriguez-Olaverri, director of pediatric spinal deformity and early scoliosis surgery at Hassenfeld Children’s Hospital at NYU Langone, who was also not involved in Chinno’s treatment. The average person has between 25 and 45 degrees of kyphosis. Chinno suffers from 140 degrees of kyphosis, which Rodriguez-Olaverri described as a “very, very rare” condition.
Travel around the world for life-changing treatments
Villena knew that moving to the United States would be difficult, but years later, she got her chance. His workplace, a human relations department with a focus on recruitment for government contracting companies in the US, opened an office in Florida. In 2023, he got a work visa, and the couple traveled more than 9,000 miles in 2023.
Chinno and Villena went to New York City to meet Lenke about six months later. Chinno, now 17, has other complications from kyphoscoliosis, and the severity of the condition can lead to other health problems, including breathing problems if left untreated.
Lenke, who has been treating patients with spinal deformities for more than 30 years, developed a three-stage treatment approach. The first is a process called gravity traction of the load, when a ring is attached to the patient’s skull. Weight is slowly added to try to stretch the spine and prepare the spine and spinal cord for future surgery.
A month later, Chinno underwent his first reconstructive spine surgery. The second followed two weeks later. Each operation takes about 10 hours, Lenke said, and the procedure unfused Chinno vertebrae and straightened the spine. Seeing her son standing upright, Villena cried, she said.
“I was really crying,” Villena said. “It’s good to see him treated.”
Daisy Villena
The surgery was followed by months of physical therapy and rehabilitation, where Chinno relearned how to walk, stand and more. Now, Villena and Chinno are back in Florida, where Chinno has overcome his shyness, made friends with his classmates and participated in the sport he always dreamed of playing. Lenke said Chinno has no spinal problems and will lead a normal life.
“I have done this for a long time. I have taken care of thousands of patients, and they are really just unique,” said Lenke from Chinno. “I really respect (Villena) for the strength and ambition to bring him to a center like ours that specializes in this type of complex deformity surgery. It was not easy for him. to have the means and willingness to get Chinno for us and to have a good attitude during all this because it is not an easy road.
