Toddler gets early boost to help battle difficult diagnosis

Mason Campbell, 2, of Minoa, had an operation before he was born to help lessen nerve damage from spina bifida. (PHOTO BY SUSAN KAHN)

Mason Campbell, 2, of Minoa, had an operation before he was born to help lessen nerve damage from spina bifida. (PHOTO BY SUSAN KAHN)

BY JIM HOWE

Before he was born, Mason Campbell underwent spinal surgery.

Now an energetic 2-year-old, Mason and his parents, Jesse and Chris, aided by a variety of medical specialists, have been working to overcome his complicated diagnosis.

PM and R Rehab

Mason at one of his treadmill therapy sessions with physical therapy assistant Clint Stelmashuck and physical therapist Olivia Pollard, DPT, at Upstate’s Physical Medicine and Rehabilitation Center. Walking on the treadmill helps Mason develop the muscle memory of walking, with a harness to help support his weight and orthotics in his shoes to help align and support his ankles and feet. (PHOTO BY ROBERT MESCAVAGE)

Mason has myelomeningocele, a type of spina bifida where the bones of his spine do not completely form, and the spinal cord and tissues covering it protrude from the back, exposing them to damage. It can mean loss of bladder and bowel control, a lack of sensation or paralysis of the legs and weakness in the hips, legs or feet, possibly for life.

After a test confirmed that the baby Jesse Campbell was carrying had spina bifida, the family, who live in Minoa, was referred to Children’s Hospital of Philadelphia, one of a handful of U.S. hospitals that offers fetal surgery to close the spinal opening and help lessen nerve damage.

“We were trying with the surgery to preserve leg movement and avoid catheterizing his bladder and bowels. It seems to have helped so far,” Chris Campbell says.

The surgery, performed at 23 weeks of pregnancy, meant 14 weeks of bed rest for Jesse until Mason was born on Oct. 14, 2013. Then he spent three weeks in intensive care. It also meant that his parents and brother and sister spent a lot of time at the Ronald McDonald House in Philadelphia before returning to Central New York.

Nienke Dosa, MD

Nienke Dosa, MD

That delicate in utero operation is “almost mystical,” says Nienke Dosa, MD, the medical director of Upstate’s Spina Bifida Center, who now sees Mason about every six months or so. She is one of the many pediatric specialists he sees.

Zulma Tovar-Spinoza, MD

Zulma Tovar-Spinoza, MD

After fetal surgery, a second operation is often required shortly after birth, notes Zulma Tovar-Spinoza, MD, Upstate’s director of pediatric neurosurgery. She operated on Mason In December 2014 to free his tethered spinal cord and remove an infected cyst.

In addition, Tovar-Spinoza helped relieve a buildup of fluid in Mason’s brain, called hydrocephalus, with another surgery in February 2014.

Mason pushes a wooden wagon while his mother, Jesse Campbell, watches. (PHOTO BY SUSAN KAHN)

Mason pushes a wooden wagon while his mother, Jesse Campbell, watches. (PHOTO BY SUSAN KAHN)

“He is doing great. With all the support available, his quality of life is excellent,” Tovar-Spinoza says of Mason. At his point, she sees him about every eight months to monitor his progress.

“Our local studies have shown that these patients have a fulfilling life. They go to school, college, get married, have kids like everybody else,” she continues.

Dosa says Mason’s future is bright. His therapy three or four times a week at Upstate includes pool exercise and treadmill walks wearing a supportive harness. Physical therapist Jennifer Fetterman keeps close track of his progress, as she and Dosa are studying the impact of early supported weight-bearing exercises for children with spina bifida.

Jesse Campbell describes her son as a tough cookie. He’s outgoing and happy, with a strong upper body. He walks with a walker, climbs and wrestles with his brother and sister. She says Ali, 4, and Christopher, 7, know to be careful of Mason’s back.

Mason’s parents feel both positive and overwhelmed, and they are grateful for the medical teams that have improved their son’s chances for a full life.

Mason at home with his sister, Ali, 4, and his brother, Christopher, 7. (PHOTO BY SUSAN KAHN)

Mason at home with his sister, Ali, 4, and his brother, Christopher, 7. (PHOTO BY SUSAN KAHN)

Layout 1 finalThis article appears in the spring 2016 issue of Upstate Health magazine.

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This entry was posted in brain/spine/neurosurgery, disability, health care, illness, patient story, physical therapy/rehabilitation, surgery, Upstate Golisano Children's Hospital/pediatrics. Bookmark the permalink.