Legend’s story: Breathing well thanks to his resilience and a team of experts

In the many long months their son, Legend, was in the hospital, Dexter and Gladys learned to take things one day at a time. They learned to never compare their baby’s progress to other babies in the neonatal intensive care unit (NICU) and to accept that he’d get better on his own time.

They also learned that a powerful antidote to the uncertainty that comes with having a child with complex medical needs is a team that works together to make care as seamless as possible – and a doctor like Yann-Fuu Kou, M.D, Pediatric Otolaryngologist at Children's Health℠.

Two babies in two different NICUs

Legend – and his twin sister Novah – were born at just 28.5 weeks, because of a problem with Novah’s umbilical cord. Weighing just 1.5 and 2 pounds respectively, they needed immediate care in the NICU at the hospital where they were born.

Not long after, the care team noticed a bump on Legend's knee. Test after test revealed an infection so severe that Legend needed more specialized care. That’s when he was transferred to the Level IV NICU at Children’s Health.

At Children’s Health, Dexter and Gladys met specialist after specialist – infectious disease, neurology, pulmonology, cardiology, ear, nose and throat – all while Novah was still at the other hospital. The care team explained that in a baby Legend’s size, the immune system is not fully equipped to fight off infections. The infection had spread throughout Legend’s bloodstream and entered his brain. Their baby would need brain surgery to put in a shunt to relieve pressure.

“The doctor was honest,” Dexter says. “Many adults don’t survive infections this severe and Legend was a baby who only weighed three pounds.”

But tiny Legend lived up to his name: He pulled through the surgery and beat the infection.

The weeks passed and Legend grew bigger and stronger. Life got a whole lot easier for the family when Novah was eventually transferred to Children’s Health.

They held out hope that Legend’s breathing tube would soon be removed and they could all be home as a family. But unfortunately, he wasn’t able to breathe on his own – so his care team recommended a tracheostomy, a tube inserted into the neck that helps with breathing.

Learning to live with a tracheostomy

The trach would help Legend breathe while his lungs continued to grow and get stronger. Legend was transferred from the hospital to Children's Health Integrated Therapy A Panda Cares Center of Hope (formerly called Our Children’s House), where his family would learn the ins and outs of caring for a baby with a trach.

“It was a lot to learn, but being able to leave the hospital felt like a big step forward,” Gladys says. “We felt a lot better after talking to Debra from the trach team, who told us: ‘Don’t worry, we won’t let you leave this place until you know exactly how to take care of your baby at home.’”

The trach team, part of the Children’s Health Airway Management Program (CHAMP), provides hands-on education for families of kids with trachs. Dexter and Gladys first practiced on a mannequin and eventually did “full rooming in,” where they managed Legend’s trach care overnight – with no help from the nurses.

After graduating from rooming in, Dexter, Gladys, Novah and Legend could finally all be home together.

A team of experts working together

The family settled into life at home, juggling the joy and busyness of life with twins. Every day, Novah and Legend got bigger and stronger.

Legend continued receiving care from the Multidisciplinary Pediatric Aerodigestive Clinic (MPAC) at Children’s Health. There, he could see Dr. Kou, his gastroenterologist for feeding support, a pulmonologist to monitor his lungs and other specialists.

Around age 3, Dr. Kou explained to the family that Legend’s lungs had gotten bigger and stronger. But his airways were too narrow to breathe on his own.

“For 70-80% of children, we can remove the trach without any procedures,” Dr. Kou says. “But sometimes surgery is required to widen narrowed airways. Legend fell in that category.”

The aerodigestive team worked together to ensure Legend's lungs, esophagus, stomach and airway were healthy – no inflammation, reflux or infections – before surgery. Then Dr. Kou explained the procedure: He would take a small piece of cartilage from Legend’s ribs and use it to help widen and support his airway during a 5-hour procedure.

“Dr. Kou told us how he’d approach the surgery and each step of the process, which helped us feel that he’d planned the safest surgery possible,” Gladys says.

Graduation day

Legend’s airway surgery went smoothly and his care team started planning the next big milestone: removing Legend’s trach.

“Removing a trach is a meticulous process that’s deliberately slow so kids and parents can adjust,” Dr. Kou says.

First, they put a small cap over part of Legend’s trach to help him get used to breathing through his mouth and nose. Over time, they worked up to him wearing the cap all day. Then Legend spent 24 hours in the hospital so his care team could make sure he could safely sleep while breathing on his own.

His parents remember the exact day Legend’s trach came out: April 23.

“It felt like graduation day,” Dexter says. “Legend was just sitting there breathing fine on his own, with a Band-Aid where the trach had been. We couldn’t believe it.”

A step above

Now 4, Legend spends lots of time playing dinosaurs and running around outside with his sister. He’s an outgoing kid who loves babies and animals and will stop anyone with a dog or stroller to say ‘hi.’

“He has this big smile and so much joy, even after everything he’s been through,” Dexter says. “That makes us so proud to be his parents.”

Legend still sees Dr. Kou for routine visits, and other members of the MPAC team for gastroenterology, speech and occupational therapy. His family is deeply grateful they can get all the care he needs in one place, close to home.

Learn more

Aerodigestive disorders – disorders that impact the respiratory tract and the upper part of the digestive system – are complex and require expertise from doctors in different specialties. That’s why the Multidisciplinary Pediatric Aerodigestive Clinic (MPAC) at Children’s Health brings together leaders in otolaryngology, gastroenterology and pulmonology to make life better for kids and families with complex swallowing and airway disorders.