Mohammed’s Spina Bifida Care Team Inspires Independence

Patients come to Sacramento from around the world to access specialty pediatric care at Shriners Children’s Northern California, but very few have traveled as far as Mohammed.

Mohammed was born in Syria while his parents were living as refugees, having fled war and family tragedy in Iraq. He was born with spina bifida, a birth defect in which an area of the spinal column doesn't form properly, leaving a section of the spinal cord and spinal nerves exposed.

Mohammed had surgery immediately after he was born to close his spine. He underwent additional surgeries during the first few years of his life in Syria to install a shunt to drain fluid and pressure from his brain, and to fix a hernia.

Finding Safety

After they fled Iraq, Mohammed’s family found temporary residence in Syria, but more war forced them to flee to yet another country to find safety.

“It was absolute panic,” said Mohammed’s father, Bassam. “I was scared for my family. Many people were trying to get to Jordan, so we did too. At first it seemed impossible, but when the Jordanian authorities saw Mohammed in his wheelchair and saw his condition, they gave us temporary entry. That’s when a window opened for us to come to the United States.”

Mohammed and his family were granted humanitarian entry to the U.S. from Jordan when he was 4 years old. Habitat for Humanity helped them get settled with housing in Sacramento. At the time, the family had no idea that Sacramento was home to one of the best hospitals in the country for pediatric spina bifida care – Shriners Children’s Northern California.

“It was meant to be that we came to Sacramento,” said Bassam. “It was fate.”

Mohammed’s Spina Bifida Care

Shriners Children’s Northern California’s spina bifida program is led by Maya Evans, M.D., and is internationally-recognized for advanced care.

Mohammed has been followed since he was 5 by an outstanding team of specialists at Shriners Children’s. He is now a 12-year-old kid who loves basketball, the Sacramento Kings and hanging out with his friends.

“Mohammed is charismatic and active,” said Dr. Evans. “He has participated in several Shriners Children’s activities like our BikeFit program. It is fantastic to see him play on his school basketball team and take any chance he can to play.”

Mohammed has come a very long way since first becoming a Shriners Children’s patient. Over the years, he has undergone surgeries to correct a deformity in his lower leg and foot, in addition to his scoliosis.

He had leg surgery when he was 7, performed by orthopedic surgeon Vedant Kulkarni, M.D. At age 11, he underwent a spinal procedure with orthopedic spine surgeon Rolando Roberto, M.D., and received a halo traction device that uses gravity and a patient’s own body weight to straighten the spine.

Although Mohammed spent many long and difficult days in the hospital for his surgeries, he is someone who sees the bright side of every situation.

“I always looked forward to seeing the child life specialists on the second floor and seeing other kids,” said Mohammed. “We played lots of video games like NBA2K and air hockey. Not to brag, but I’m pretty good at air hockey.”

Supporting Mohammed’s Independence

Mohammed currently attends middle school and uses a wheelchair to navigate his everyday life. Bassam credits Dr. Evans and the Shriners Children’s team for connecting the family with every resource possible to give him the ability to live a more independent life.

“From his wheelchair, to his shoes, to physical therapy at school, Shriners Children’s has given us everything we could have possibly imagined to make Mohammed independent,” said Bassam. “Shriners Children’s helped us connect with support services and physical therapy at school, which is very helpful. They helped us identify assistance we didn’t even know we needed.”

Mohammed appreciates Dr. Evans’ humor and special ability to connect with him and other teens.

“Dr. Evans knows how to make jokes, for real,” said Mohammed, laughing.

He is currently the only kid in the school district who plays basketball from a wheelchair and doesn’t let it hold him back. He has created a special play for himself called the Mohammed Shield. The play calls for his four teammates to form a square around him while he drives to the basket, shoots and scores.

“It’s the best,” said Mohammed. “I love basketball, that’s all I want to do. I want to go pro one day.”

A Bright Future

Dr. Evans and Mohammed’s medical team will continue to follow him until he becomes an adult. Soon he will undergo colorectal and gastrointestinal treatment to remedy issues caused by his spina bifida. Bassam hopes the treatment will make Mohammed even more independent than he is today.

“We are thankful for all that Shriners Children’s has done for Mohammed,” said Bassam. “Shriners Children’s has given our family so much. They’ve fixed his spine, leg and helped him live as independently as possible. We are very grateful.”

Mohammed looks forward to playing more basketball with his middle-school team and hopes to see the Sacramento Kings win a championship someday.

“One day I’ll be there to see the team win their title,” said Mohammed. “And I’ll be sure to send Dr. Evans a photo from the arena, because she’s the reason I can do so many things.”