Most children who receive care at Lurie Children's live within a 100-mile radius of Chicago. Some travel from further away: last year the hospital treated children from all 50 states.
And then there are children like AliAlhadhi Ahmad, or "Ali," who traveled nearly 6,800 miles from his home in Kuwait for specialized care at Lurie Children's. Last year, children from 51 countries were seen at the hospital, most of them coordinated through the International Patient Services Department, which assists families with a full range of services during their stay in Chicago.
Ali was born nearly two years ago with spina bifida, a neurological defect that affects the development of the backbone, the spinal cord and its surrounding nerves. This condition can cause a portion of the spinal cord and its surrounding structures to develop outside the body along the spine. Each year, more than 500 children receive care from Lurie Children's Spina Bifida Center, world-renowned for its multidisciplinary care and clinical research activity.
Although neurosurgeons in Kuwait were able to close the opening in Ali's back, his mother, Ghadeer, and father, Mohammad, found that there were no medical facilities in Kuwait with comprehensive care for children with spina bifida. They also found it difficult to educate themselves about the disorder and had to turn to the internet for basic information.
The Kuwaiti government selected Lurie Children's for Ali's care, due to the spina bifida program's international reputation. His care was coordinated through the hospital's International Patient Services Department, and the cost of care and his family's travel and living expenses was subsidized by the Kuwaiti government.
Ali, his parents and sisters Janna and Alyaa, arrived in Chicago in May 2015, when he was six months old. There, Ghadeer and Mohammad met with pediatric neurosurgeon Robin Bowman, MD, Director of the Spina Bifida Center, who coordinated his care with specialists in orthopaedic surgery, urology and physical and occupational therapy.
"We liked that there was one specific doctor in charge of Ali's care," says Mohammad. "Dr. Bowman knew what Ali needed, and made sure he received it. She also made us feel very comfortable, and told us not to worry."
Tests revealed that Ali had fluid in his back, and might need surgery to insert a shunt to remove it. He underwent regular MRI scans of his brain and spine, and ultimately Dr. Bowman decided surgery was not necessary. Ali also had regular physical and occupational therapy sessions. Finally, after seven months in Chicago, the family returned to Kuwait.
Ali, who has no intellectual delays, uses a wheelchair to get around. During the family's follow-up visit to Lurie Children's in July 2016, Ali was fitted with a reciprocating gait orthosis (RGO) and leg braces. RGOs are designed to shift the patient's weight and advance his or her legs in conjunction with a walker. After twice a week sessions with a physical therapist to build up strength, he and his family returned home four months later, where Ali is continuing physical therapy and working with his RGO.
Ali's family is grateful for the care their son received so far from home, and their experiences at Lurie Children's inspired Ghadeer to start a spina bifida awareness association on Instagram (@SBawareness) to share information and resources with other families in Kuwait and its neighboring countries.
"Ali is a happy child, and our hope for him is to remain happy and to appreciate life," says Ghadeer. "We also want him to get the best education he can and to be an inspiration for other children like him. We want him to grow up to be confident, and not to feel like he's less capable than other people."
Support for Lurie Children's Spina Bifida Center is provided by Daniel and Samantha Dufresne and the Spastic Paralysis Research Foundation of the Illinois-Eastern Iowa District of Kiwanis, among others.