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Best Care & Beyond

Jonathan HardyJonathan Hardy has severe intellectual and physical disabilities, but that doesn't prevent his mother, Kandi Hardy, from having hopes for the 2-year-old boy. "I want him to be the best Jonathan he can be," Hardy says. "My goal is to make him comfortable and let him enjoy the things he likes. We know he likes music. Whatever his potential is, I want to maximize it for him."

A team of physicians at the University of Illinois Hospital & Health Sciences System have been working to help keep Jonathan healthy and enhance his development ever since he was delivered via emergency cesarean section in January 2009. After a 34-week ultrasound determined that Jonathan had hydrocephalus (a buildup of fluid inside the fluid spaces of the brain), Hardy, who lives with her husband and their three other children in Joliet, was transferred to the University of Illinois Hospital, which has a department of obstetrics and gynecology that specializes in high-risk obstetrics.

It was determined that Jonathan also had suffered a stroke while in the womb, which contributed to the severe brain damage he suffered. Five days after Jonathan was born, Demetrios Nikas, MD, assistant professor of neurosurgery, performed surgery to relieve the pressure on the child's brain.

Jonathan subsequently spent six weeks in the Children's Hospital University of Illinois neonatal intensive care unit. He's undergone additional brain surgeries by Nikas and received care from a team that includes specialists in pediatric neurosurgery, neurology and pulmonology.

Jonathan's care has been directed in part by Miriam Kalichman, MD, associate professor of clinical pediatrics and medical director of the Children's Habilitation Clinic, a program of the Children's Hospital University of Illinois division of specialized care for children, which provides care for children with developmental disabilities and education for health professionals in the care of children with disabilities.

When Jonathan didn't gain weight, Kalichman persuaded Hardy to feed him through a tube connected to his stomach, which has helped him grow. She also has worked with state agencies to make sure Jonathan receives the at-home therapy he needs, including physical therapy to keep his limbs from stiffening due to his cerebral palsy.

Another key member of the care team is Alma Bicknese, MD, associate professor of clinical pediatrics and chief of the division of neurology in the department of pediatrics, who has treated Jonathan for seizures brought on by epilepsy. Bicknese convinced Hardy to put her son on medications despite her concerns about their side effects.

The medications were effective in controlling the seizures, enabling Jonathan to be more alert and interactive, which in turn contributes to his development. "He's doing better than expected," Hardy says. "That is due to the care he receives. He's been taken very good care of. The right decisions were made at the right time, which has made a difference."

Hardy praises her son's physicians for their clinical skill, compassion and availability on the many occasions when she's had problems or questions having to do with caring for her son. "They have truly gone above and beyond the call of duty, which is why the University of Illinois Hospital & Health Sciences System is such a great hospital for children," she says. "It's the only hospital that I'd want to manage my son's care."

The Center for Pediatric Neurological and Developmental Disorders is focused on pediatric epilepsy, headache, narcolepsy and developmental disorders.