Tommy Bonner was born three weeks early on Dec. 5, 2019.
What followed was a seven-day stay in the neonatal intensive care unit at Abington Hospital – Jefferson Health, during which doctors found a small mark on his back. Doctors assured Jessica Bonner, Tommy’s mother, that the mark was probably nothing to worry about, but advised keeping a close watch on it anyway.
But doctors later discovered Tommy was born with spina bifida. Last month, Bonner underwent a complex 11-hour surgery to repair a tethered spine. A neurosurgeon removed a fatty tumor from his spine and fused the nerves wrapped around it back together.
When Tommy was born, he exhibited breathing issues, and after he was discharged, his pediatrician monitored him while keeping an eye on the spot on his back. In February, the Bonners found themselves at CHOP, where their son was dealing with Respiratory syncytial virus (RSV), a cold-like virus that can be serious for babies or high-risk groups.
Tommy wound up spending several days at CHOP, during which doctors saw the unusual looking area on his back and ordered an ultrasound. When the ultrasound came back inconclusive, they suggested an MRI. Then COVID happened, and the family was left in limbo, unable to bring Tommy in for the scan.
Jessica recalled it as a nerve-wracking time for the family to know something was wrong and be left in a state of uncertainty. Her husband, Daniel, encouraged the family to just take things day by day.
When COVID restrictions finally began to ease and the family could bring Tommy in for an MRI in June, doctors discovered a large tumor. The Bonners met with a neurosurgeon at CHOP who explained that Tommy had spina bifida, meaning his spine had never fully fused together. In the space where the spine was left unfused, a benign, fatty tumor had grown and wrapped itself around Tommy’s nerves. The surgeon explained that he’d have to remove the tumor, tether Tommy’s spine and reconstruct the nerves. The surgery late last month was expected to take five hours; it took just over 11.
Jessica and Daniel anxiously sat in the waiting room, and a nurse came out hourly to assure them the surgery was going well. They’d later learn that when the operation began, doctors realized the situation was more complex than anticipated. But the surgeon was able to fully remove the tumor and fuse all of Tommy’s nerves back together.
After two days in the pediatric ICU with a fever, Tommy was moved to a regular room, then released. Jessica said despite it all, her son never lost his positive attitude and even came out of surgery with a smile on his face.
Tommy is still unable to pass his urine, so the family learned how to catheter him every three hours. Jessica said her son is currently on a handful of medications and steroids while he recovers.
The road ahead is still filled with uncertainty. Tommy’s parents know he has spina bifida, meaning he’ll need both physical and occupational therapy. The family has plans to follow up with a spina bifida clinic in October, and they will still need to see Tommy’s neurologist and urologist in the weeks to come.
It is not known if Tommy will be able to walk, and there’s a high probability he’ll need a subsequent surgery to retether his spine again when he gets older. Jessica said spina bifidia is a disability, so the Bonners have explained to their two other children, Dawson, 5, and Emma, 2, that Tommy may need a little extra help along the way.
The family’s insurance is only covering 80 percent of Tommy’s medical bills, and with Jessica currently in graduate school, they’re a one-income family. She said on top of the procedure costs, parking, meals and other hospital expenses quickly add up.
Jessica said she and her husband aren’t the type to ask for help, so she felt a bit uncomfortable when her mother set up a GoFundMe page to help with expenses. But she said support from the Cherry Hill community has been nothing short of overwhelming.
“We’re so grateful to everyone who’s reached out, not only financially but prayers and support and caring about a stranger’s child,” Jessica noted. “It’s been a truly humbling experience having everyone in our community rally behind us and care about us.”