First-of-Its-Kind Procedure Brings Hope for Phahim’s Future

“This kid is gorgeous!”

Phanice Hunter and Yousuf Sabir-Calloway will never forget the first words their doctor said after their son, Phahim, was born.

After months of uncertainty, of not even knowing if their baby boy would live outside the womb, they could finally breathe a sigh of relief. “It was a big, huge relief to see him blinking, looking around, crying. We just kissed the mess out of him,” says Phanice, smiling. “He looked just like he did in the 3D ultrasound.”

Six months into an otherwise routine pregnancy, an anatomy ultrasound revealed a rare congenital issue called Juene syndrome, or asphyxiating thoracic dystrophy, which causes Phahim to have a very small, bell-shaped ribcage.

Though he entered the world blinking and crying - and gorgeous as can be - Phahim’s condition leaves little room for his lungs to grow and can cause life-threatening breathing problems. He’ll need a ventilator, or breathing machine, for months if not years to help him breathe and was whisked to the Dale and Karen Sisel Neonatal Intensive Care Unit (NICU) at Atrium Health Levine Children’s Brenner Children’s Hospital right away. 

First-of-Its-Kind Procedure Brings Hope for Phahim’s Future“Walking on that floor, you can feel the babies fighting,” says Yousuf. “Phahim was at the end of the hall, and I was fighting back tears just feeling that energy all the way down. I’d pray all the way until I got to him.”

After 5 months in the NICU, Phahim was able to go home, with the continued support of a ventilator, as well as a breathing tube in his neck called a tracheotomy. As intimidating as caring for Phahim away from the hospital might’ve been, Phanice says waking up to their baby boy every morning felt “like Christmas.”

“The process of taking a medically complex child home with a ventilator is intense,” says Julie Kerth, PNP, a nurse practitioner on Phahim’s pediatric pulmonology team. “It takes many hours of training and a very dedicated family. Phahim was blessed with Phanise and Yousuf as his parents. They are incredibly smart, love him immensely, and have always been his greatest advocates.”

Though Phahim and his family had already overcome so much, Jeune syndrome is a serious condition. Not long ago, few children with the disease lived more than a few years. But today, there’s a promising but complex surgery to treat it - and Phahim’s Brenner Children’s Hospital care team set out to be among the first in North Carolina to perform it. 

World-class pediatric care, close to home

Jordan Fett, MD, a pediatric pulmonologist at Brenner Children’s Hospital, knew there was only one way to treat Phahim’s condition: a procedure called VEPTR. 

VEPTR (vertical expandible prosthetic titanium rib) involves surgically attaching a metal device to the ribs that separates them and allows the lungs to grow as the child grows. It’s currently the only FDA-approved treatment for Jeune syndrome.  

“The surgery is unique simply because it is one-in-a-million that a patient would be a good candidate,” says Dr. Fett. “The surgery itself is very difficult to perform ... the fact that Phahim required a ventilator made it more complicated.”

Due to the rarity and complexity of the procedure, Phanice and Yousuf were fully prepared to travel out-of-state if necessary, but they didn’t need to. Though only a few surgeons across the nation are trained in VEPTR, one of them - Michael Hughes, MD - is right here in Winston-Salem, at Brenner Children’s Hospital. 

But Dr. Hughes says surgery is just one part of the puzzle. “No surgery can be a success without excellent care before, during and after. Brenner Children’s Hospital has not only the types of teams complex patients need, but the caliber of experience. Having resources and people like the ones I’m lucky enough to work with is the only way kids like Phahim and their family can be success stories.”

For Phahim, his team has included Drs. Fett and Hughes, as well as respiratory therapists, home health nurses, pediatric intensive care providers and more - all working as one to provide the best care. 

“We’re all dedicated to Phahim on a personal level," says Dr. Fett. “Patients like Phahim are the reason we do the work we do. We embrace the challenge each new case can pose and motivate our hospital to take on the difficult cases that others may shy away from.”

Phahim underwent surgery to receive his first VEPTR device in September 2023, on his right lung, and his second in February 2024, on his left lung. The next step is expanding the devices to expand his ribs, increase his lung volume, and, in turn, enhance his life. 

“I’m just really proud to say he was the first to have this procedure done here, and I want other parents to know they can trust Brenner Children’s Hospital, too,” says Phanice. “If you have a child who has a diagnosis that’s similar to Phahim’s, know that you can come to Brenner - there's help here."

Taking Phahim’s lead

First-of-Its-Kind Procedure Brings Hope for Phahim’s FuturePhahim hasn’t been a NICU patient in nearly two years, but Phanice still visits, now as a Family Support Coordinator with the Family Support Network. 

"I’ve never forgotten the people who have helped me - not just the providers, but the other moms in the NICU. They’re my NICU sisters. I’m glad I’m able to pay it forward in a way,” says Phanice.

Though he's still in the beginning stages of what will be a long process, 2-year-old Phahim’s condition has already seen improvements. “My most recent pulmonology visit with Phahim was a telehealth visit in the comfort of his home. He successfully came off of ventilator support for 30 minutes and is eating by mouth, making amazing developmental progress and enjoying time at home with his family,” says Kerth.

Eventually, Phahim’s parents and providers hope he won’t need the ventilator at all, but they’re taking it day by day. For now, Phahim will use his ventilator and tracheotomy with pride. “We like to say Phahim is a ‘child with accessories,’ so no pity” says Phanice. “He is resilient. He is strong. He has a will to live - and he will fight.”