Bryce S A Breath of Fresh Air – Bryce’s Story

“I’m so thankful for them,” says Yvette. “Without them, there would be no Bryce.”

An innovative surgery allows a child with a life-threatening disorder to breathe on his own.

Yvette Barnett-Somers of Essex County was elated when she found out she was pregnant with her second child in 2019. “I’d planned for him,” says Yvette, who already had a 13-year-old daughter, Brianna.

Yvette had been under the care of an infertility specialist at Newark Beth Israel Medical Center (NBI), where she worked as a certified surgical technologist. “I had genetic testing and all my ultrasounds,” she says. “Everything came back great.”

Her due date was April 21, 2020. But 25 weeks into her pregnancy, her water broke. She was hospitalized at NBI for 12 days before giving birth to her son, Bryce Chance Somers, on January 21, at just 27 weeks.

“He weighed only 2 pounds, 2 ounces,” says Yvette. “He was a peanut.”

After being born premature, Bryce was intubated in the neonatal intensive care unit (NICU) at Children’s Hospital of New Jersey (CHoNJ) at NBI, part of the Children’s Health network at RWJBarnabas Health. His lungs collapsed several times. Doctors worried that something even more serious might be wrong. “He was floppy,” Yvette says. “He wasn’t able to suck, and he was very limp.”

Tests probed the cause, and the neonatology team—concerned because of what the symptoms might mean—discovered that Bryce had Prader-Willi syndrome, a rare and complex genetic disorder marked by physical, mental and behavioral difficulties.

Living Life, With Help

Key features of Prader-Willi syndrome include hyperphagia, or an incessant and insatiable hunger; hypotonia, or poor muscle tone; distinct facial features; a poor sucking reflex; poor responsiveness; and certain forms of physical underdevelopment.

“I was told that Bryce would never be able to live independently, drive or have children, and he would not be able to get off of the ventilator,” Yvette recalls. Bryce remained in the NICU and, at 4½ months, as the COVID-19 pandemic was raging, underwent surgery in which he was given a tracheostomy— sometimes referred to as a trach—and a feeding tube called a G-tube.

After the procedure, Bryce was transferred to Children’s Specialized Hospital (CSH) in New Brunswick. Both CSH and CHoNJ are part of the Children’s Health network at RWJBarnabas Health. “The whole staff is truly amazing,” says Yvette. “I lived at CSH with Bryce, and they taught me how to care for him—how to bathe him, suction and change the trach, perform trach CPR and administer his medications through the G-tube.”

Initially on full ventilator support, Bryce was gradually weaned off this assistance. “Eventually, he went home with just a trach,” Yvette says.

When Bryce was released, Yvette needed to continue working—but at a job that would allow her to care for Bryce. NBI’s human resources department reassigned her to a receptionist role that would be more flexible than her previous surgical position. “I am so grateful to them,” Yvette says.

A Scare – Then Hope

At first, Bryce’s life at home went as well as could be expected. But in summer 2022, Yvette was helping her daughter, Brianna, prepare for her sweet-16 party when Bryce suddenly stopped breathing.

Yvette began CPR while Brianna called 911. Bryce was taken by ambulance to CHoNJ and admitted into the pediatric intensive care unit (PICU). “I didn’t think he would make it,” Yvette says. “While he was in the hospital, I got a heart tattoo in the same place as his trach, as a symbol of my love for him.”

Bryce continued to have intermittent successes and struggles over the next two years. By spring 2024, he’d had eight surgeries in his short life. But he was also well enough to undergo a milestone, innovative procedure that held out a seemingly impossible promise—that he might breathe without assistance.

"Without this procedure, Bryce would’ve had to live his life with his trach,” says Yvette.

It would be only the second time the complex and highly specialized surgery, called a laryngotracheal reconstruction (LTR), had been performed at CHoNJ. Pediatric otolaryngologist Brian Manzi, MD, performed the six-hour surgery on May 9.

“This procedure requires a highly skilled team encompassing coordination between specialized pediatric anesthesiologists and pediatric otolaryngologists to share and repair the airway intraoperatively, as well as highlevel neonatal and pediatric intensive care units to manage the pre- and post-care,” Dr. Manzi says. “The surgery itself entailed removing the diseased portion of Bryce’s windpipe and replacing it with a thumbsize length of cartilage from a right rib.”

After his surgery, Bryce stayed at CHoNJ until June 4, then transferred to CSH for several weeks of rehabilitation. “Bryce’s rib cartilage will regrow,” says Dr. Manzi. “Now his airway is completely open, and he is breathing on his own without obstructions.”

By the time he was discharged, Bryce was also sitting independently, bearing weight and walking.

Bryce made an impression on CSH caregivers. “I worked with Bryce when he was a tiny baby in a big crib, with so much equipment,” says Charli Nobles, a child life specialist at CSH. “And I was working with him when he walked himself right out of our hospital.”

Yvette considers his successful surgery and impressive recovery nothing short of a miracle. “He wouldn’t be here without God, prayers and the talented and amazing teams at CHoNJ and CSH,” she says.

January 21 marked Bryce’s fifth birthday—“and his first birthday trachfree,” says Yvette. The guest list for a birthday party included members of his numerous medical teams over the years.

“I’m so thankful for them,” says Yvette. “Without them, there would be no Bryce.”

Learn more about the Children’s Health network at RWJBarnabas Health.