Tracheomalacia: Cannon’s Story

Pediatric Care in Florida
Cannon and his mom and dad getting ready to leave the NICUCannon and his mom and dad getting ready to leave the NICU

Ashley didn’t know if this day would ever come. Her baby boy is about to turn 1. 

Cannon was born after only about 22 weeks gestation. He weighed 17 ounces, slightly more than a football. The doctors were cautious in setting expectations.

“He was so sick, I didn’t even get to hold him until he was 11 days old,” she says. “I remember that day. They took pictures of me holding him because no one was sure he would live much longer, and they wanted me to have a special memory.”

Eleven months, 12 operations and many twists and turns later, Cannon went home on Aug. 11, providing a more special memory.

Now comes yet another. Sept. 16 is Cannon’s first birthday.

A Surprise

Ashley was enjoying a day at ZooTampa at Lowry Park on Sept. 10, 2019, when her water broke, well ahead of her Jan. 18 due date. She didn’t realize what was happening at first, so she called her doctor the next morning. Since she had only been pregnant about 22 weeks, her doctors wanted to wait as long as possible to deliver the baby.

Cannon had other plans.

On Sept. 16, she was admitted to Bayfront Baby Place, which is on the third floor of Johns Hopkins All Children’s Hospital. Within an hour of arriving, with just two pushes, Ashley gave birth to Cannon. “When he was born, they told me he would probably not make it out of the delivery room,” Ashley says. “As a new mom, hearing that was very scary.

“My boyfriend, Robert, who is Cannon’s dad, was still living in south Florida. I called him and said, ‘Cannon’s coming now! You need to get up here as soon as you can.’ He did what I said, arriving a few hours later still dressed in his work clothes.”

But Cannon was a fighter. At 1 pound, 1 ounce, he was among the smallest babies to survive at Johns Hopkins All Children’s, which is among the nation’s 50 best neonatology programs in U.S. News & World Report’s 2020-2021 rankings. The hospital’s neonatal intensive care unit (NICU) carries a Level IV rating, the highest available from the American Academy of Pediatrics. The NICU team has extensive expertise with extremely low birth weight babies, meaning those born less than 2 pounds, 3 ounces. The team treats more than 50 such cases a year.
Still, Cannon was a challenge.

“I had all the difficult discussions with the family, including several about whether he would survive or not,” says Fauzia Shakeel, M.D., a neonatologist who specializes in intestinal disorders.

Cannon had numerous complications, including: prematurity related brain bleeds and intestinal perforations with infections requiring multiple surgeries and a massive bowel resection. His lungs were extremely underdeveloped and premature and his airways were floppy requiring ventilator support. Every day, Ashley and Robert felt as if they were confronted with a new issue.

A Team Approach

But Ashley and Robert were not alone. Along with Shakeel, Johns Hopkins All Children’s has an array of medical and surgical specialists. Several were involved in Cannon’s care.

Jason Smithers, M.D., is a pediatric surgeon who leads the Esophageal and Airway Treatment (EAT) Program at Johns Hopkins All Children’s. He performed three procedures on Cannon to improve his airway and was instrumental in avoiding the need for a tracheostomy.

“Cannon had a combination of problems,” Smithers says. “We did an airway evaluation and saw that he had severe tracheomalacia, which caused the collapse of the airway when he was breathing.

“We did surgery and he improved quite a bit, but not enough to be off all his respiratory support. He either needed a second surgery to open the airway, or the other option was a tracheostomy, that would involve creating an opening in the neck in order to place a tube into the windpipe to allow air to enter the lungs. With that, he would have gone home on a breathing machine.”

As it turned out, after the second surgery, Cannon’s breathing started to improve and it became clear he would not need a tracheostomy or a ventilator. 

“I think this kid surprised a lot of people,” Smithers says.

“From that point on,” Ashley says, “I knew Cannon was going to make it.”

More Support

Ashley’s mother, Terri, lives in Chicago. She, along with Ashley’s grandmother in Deerfield Beach, was able to follow Cannon’s progress through a secure live stream video feed available to NICU families because of the support of donors to the Johns Hopkins All Children’s Foundation.

“Cannon is the first grandchild for my mom and great-grandchild for my grandmother, so it was a big deal for them to be able to watch Cannon on a daily basis, especially when the COVID-19 pandemic set in and visiting in person was suddenly limited,” Ashley says.

Being able to go home required great faith from Ashley and Robert, skill from the medical and surgical teams, and tenacity on Cannon’s part. Shakeel and others from the clinical team watched with pride as he prepared to depart.

“I think he is miraculous,” Shakeel says. “A lot of times we thought we had lost him. But he always bounced back, which tells you the resilience of children. It also gives us extreme pleasure and rewards in seeing that he is going home in spite of having had a lot of complications.”

Ashley is grateful and she and Robert were eager to take their son home.

“Today means a new beginning and a fresh start for us,” she says as they prepare to leave. “It’s been a roller-coaster ride. There have been as many ups as there have been downs. It was just a matter of taking one day at a time. And today we are going home. 

“It’s a gift and we are very blessed.”

Esophageal and Airway Treatment Program

Led by esophageal and airway expert Jason Smithers, M.D., the Esophageal and Airway Treatment (EAT) Program at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, treats babies and children with esophageal and airway concerns with compassionate care, innovative techniques, and cutting-edge technology and equipment.