On cruise control

Joy Brown had no reason to believe she was in any danger when she traveled to Atlanta in 2016 to visit her grandmother for the holidays. Then 25 and pregnant with her second child, Brown had recently been seen by her obstetrician and completed a 20-week fetal anatomy scan to check her baby’s development.

“I wasn't deemed high risk or anything,” recalled Brown, who was months away from her delivery date at Baptist Medical Center Jacksonville. “But as soon as I got to my grandmother’s house, I could tell something was wrong.”

By the time she made it to the nearest Atlanta hospital, she was already in active labor. The following day, Christmas Eve, her son, Byran, was born premature, weighing only 1 pound, 3 ounces.

Brown’s pregnancy lasted only 23 weeks, which is right at the cutoff point for medical viability, a term referring to the baby’s ability to thrive outside the womb. Babies born this early have anywhere from a 1% to 60% survival rate with advanced medical care.

Baby Byran was immediately placed on an oscillator to help him breathe and transferred to the hospital’s Neonatal Intensive Care Unit (NICU).

“Because he was born so small, he couldn’t eat for the first couple of weeks,” Brown said. “He also had a brain bleed and the fluids on his brain were impacting his breathing. He eventually had a reservoir inserted on one side of his head to drain the fluid.”

One milestone at a time

In March 2017, more than two months after he was born, Byran was transferred to Wolfson Children’s Hospital, a Level 1 Pediatric Trauma Center, via Kids Kare helicopter. Byran had to be intubated for the 300-mile trip.

After he arrived at Wolfson Children’s, pediatric neurosurgeon Nathan Ranalli, MD, placed a shunt in Byran’s brain to alleviate pressure and drain excess cerebrospinal fluid. Next, Angela Black, MD, a pediatric otolaryngologist, performed a tracheostomy, a surgical procedure that involves creating an opening in the neck and inserting a tube into the child’s windpipe.

“It was hard to imagine my child having a hole in his throat. I had to come to grips with that,” said Brown.

In all, Byran spent 11 months in the Wolfson Children’s NICU. He came home on a ventilator but never had to be readmitted to the hospital. By 2018, he was off the ventilator and breathing with the help of oxygen. The Bower Lyman Center for Medically Complex Children at Wolfson Children’s has been his primary care medical home ever since.

Moving her family forward

In 2021, Byran had rhizotomy surgery, a minimally invasive procedure to treat chronic pain or spasticity (muscle stiffness). Afterward, Byran was referred to Wolfson Children’s Rehabilitation for six months of extensive therapy at the Drew Bradbury Center.

“The rhizotomy performed by Dr. Renalli was one of the best decisions we ever made because Byran would cry sometimes because his muscles were so tight,” Brown recalled.

Determined not to let Byran’s conditions hold him back, Brown booked a three-day trip to California that involved cross-country air travel for her family of five – plus special medical equipment, like oxygen cylinders – and said she and her husband, Bryan, pulled it off without a hitch.

“It opened my eyes to the fact that we can get out as a family, do things and have a regular life without having to worry so much about Byran’s situation,” she said. “I don’t want his disabilities to cripple us.”

After the California trip, Brown started scheduling more in-state and out-of-state family excursions. A year and a half later, Byran had his tracheostomy removed and the opening in his neck closed, Brown said.

Knows when it’s time to go

In 2023, Byran, who has attended Mount Herman Exceptional Student Center in Jacksonville since age 3, celebrated another milestone – riding the bus to school on his own.

“When your child isn’t able to walk or talk, you struggle at times with when to let go,” said Brown. “The first day he rode the bus I felt guilty that I had held him back for so long.”

This past summer, Byran and his family took a cruise to the Bahamas, enjoying attractions like a waterpark and a chocolate factory. He recently celebrated his 8th birthday and will be taking another cruise to the Bahamas this spring to celebrate his father’s birthday.

“Byran is very observant. He absolutely knows when we are packing up for our family trips,” said Brown. “He gets so excited, and we can tell because he starts slapping the car windows.”

The Bower Lyman Center for Medically Complex Children at Wolfson Children’s Hospital serves children with chronic complex medical conditions that require ongoing care by multiple pediatric specialists. To learn more, call 904.202.8920.