Choices for a ‘little miracle’
Bryson Jackson doesn’t have feeling below his waist. But that doesn’t stop the 18-month-old born with a rare condition of spina bifida from getting around on his own.
On a Saturday afternoon, Bryson flies across the floor on his ZipZac, which looks like a miniature wheelchair. The red booster seat with black wheels on each side lets Bryson move without help from his mom, dad or anyone else.
Aside from sometimes getting caught on the carpet, Bryson is mostly mobile. When he is not sitting in his ZipZac, Bryson lets his mom know that he wants to be on the move by flapping his little arms and attempting to turn invisible wheels at his side.
As he rides around, Bryson’s blue eyes light up and he grins ear to ear.
“I love that thing, its such a blessing,” said Bryson’s mom and Henderson resident Hope Jackson.
She said her family held a T-shirt fundraiser to fund the purchase of the ZipZac, which can cost as much as $1,500.
“It’s so crazy because it was instant,” Hope said of how her son adjusted to the ZipZac. “As soon as I put him in that, it’s like he knew what to do and how to turn it.”
Bryson has been in surgery five times. In fact, his first surgery took place before he left his mother’s womb.
Hope Jackson learned about her son’s condition when she was 16 weeks pregnant at a routine visit to find out her baby’s sex.
“They told me he had fluid on his brain, so I knew then something wasn’t quite right,” she said.
Hope said the next day she went to UNC hospitals, where she saw Dr. William Goodnight, an assistant professor in the Division of Maternal Fetal Medicine.
“When I first saw Dr. Goodnight, they did a 3-D ultrasound trying to figure out if it was spina bifida,” Hope said. “You could see Bryson, you could see his nose, his eyes, his mouth. He looked just like my other two children. Then, he sat my husband and I down and said, ‘This is the part of my job I do not like.’ And he went on to tell us that Bryson had spina bifida and he said we had some choices that we needed to make.”
Goodnight explained their options and told them about an in utero surgery offered at UNC hospitals.
“I thought, I’ve got to try because it was to better Bryson and better his future,” Hope recalled.
Spina bifida, a birth defect that affects the spine, is a type of neural tube defect that literally means “split spine.”
It develops even earlier than four weeks into pregnancy. Babies born with spina bifida have a backbone that does not close completely.
The amount of damage to the spinal cord and nerves depends on the location of the opening in the spine.
Bryson’s spina bifida condition is one of the most common types, called Myelomeningocele.
Babies born with Myelomeningocele have a sac of fluid protruding through the opening in the back that can contain nerves and part of the spinal cord.
Pediatric Nurse Practitioner Gretchen Delametter said one of the complications associated with spina bifida is hydrocephalus, which damages the brain when the ventricles fill with fluid and place pressure against the brain tissue.
When Hope was 24 weeks pregnant, Goodnight performed the in utero surgery to close the opening in Bryson’s back, while still in the womb.
Goodnight said the fetal surgery reduces the chances of needing a ventriculo-peritoneal shunt that treats the fluid accumulating in the baby’s brain.
Bryson was born seven weeks early, weighing only 3 pounds.
A year after he was born, doctors inserted the shunt, which is permanent unless there are complications.
He has a feeding tube because he doesn’t eat much by mouth and the tube allows him to get the nutrition he needs, Hope said.
She said he will eventually need leg braces to keep his legs supported and his feet positioned correctly.
“His feet are too little for them right now,” she said. “If he does walk, he will have to have a lot of equipment to help him.”
Hope takes Bryson to physical therapy multiple times a week and she constantly commutes back and forth from her home to UNC hospitals for Bryson’s appointments.
On Sept. 28, the My Little Hero golf planning committee will hold the first charity golf tournament at Kerr Lake Country Club to support a children’s charity, which will be announced at the event, and Bryson’s medical bills.
Hope and her husband still don’t know if Bryson will walk. Still, he laughs, plays and smiles like any other child.
“He is definitely my little miracle, that is for sure,” Hope said. “And I would do it all over again.”
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