Vaida loves to dance.

She loves everything about it — the self-expression, the competition, and just the sheer joy of it lights up her 7-year-old spirit like nothing else.

Vaida and her family traveled from South Australia to Johns Hopkins All Children's.

She has been dancing in her home city of Adelaide in South Australia since she was barely old enough to walk — but it hasn’t always come easily for her.

Vaida has been challenged by health issues for much of her life — issues severe enough to lead her family to travel across the globe to Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, for specialized care.

Challenges

The problems first appeared when Vaida was an infant. She suffered with colic and reflux that her mom, Lisa, describes as “next level.”

Then came the frequent and prolonged respiratory illnesses that left Vaida fatigued, seemingly drowning in mucus and often struggling to breathe.

“She would sound like someone with emphysema, you know, that wet cough that would simply not go away,” Lisa says.

Vaida was only 3 months old when she first stopped breathing and was rushed to the hospital.

Over time, a troubling pattern emerged. Vaida would get very sick, then she would get better for a time before experiencing another crushing illness, prompting yet another hospital admission. 

As Vaida grew from infant to little girl, the pattern did not improve. She was taken to the hospital almost monthly.

What was going on with Vaida?

When she was 3 years old, a respiratory specialist finally issued a diagnosis that would help explain her chronic illness.

Tracheomalacia

Vaida was diagnosed with severe tracheomalacia, a condition where the trachea is either abnormally shaped or too soft and pliable, or both, leading to a collapse of the airway while breathing.

Tracheomalacia is most often congenital, but it may also be acquired.

While troubled by the diagnosis, Vaida’s parents were relieved to finally know what their daughter was dealing with. Now they could act.

“We said, ‘great. We have an answer,’” Lisa says. Now, what was next?

The problem was, there wasn’t much offered. 

Lisa was told by Vaida’s doctors that the only reasonable treatment was medication, and that, hopefully, she would outgrow the problem.

So, Vaida lived on antibiotics and steroids and inhalers and hoped for better days.

“Our medicine cabinet looked like a pharmacy. Let’s put it that way,” her dad, Conan, says.

Meanwhile, Vaida’s young life continued to be compromised by her illness.

Her parents would take turns sleeping with her at night for fear she would have an episode that would leave her unable to breathe.

Her activities were limited, she often didn’t feel good, and she would sometimes miss school.

She had a growing list of things she couldn’t do — sleepovers with friends were too medically risky, camping and campfires were out because the smoke could impact her airway — the list went on.

Discouraged by their health care choices, Lisa and Conan were concerned for their daughter.

After an exhaustive search for options in Australia, they began to wonder — was there an answer elsewhere?

They wanted more for Vaida.

Another Choice

Fresh out of ideas, Lisa went online and discovered a parents’ support group for children with tracheomalacia. That’s where she learned about the Esophageal and Airway Treatment (EAT) Program at Johns Hopkins All Children’s Hospital.

The program is led by Jason Smithers, M.D., a pediatric surgeon recognized for innovations and expertise in thoracic surgery, including advanced surgical treatment of airway issues such as tracheomalacia.

The family reached out to Smithers’ team and very quickly, their hope was restored.

“We knew from the very first Zoom call with Dr. Smithers that we were going to come to Johns Hopkins All Children’s,” Conan says.

Smithers and the EAT team receive inquiries from families like Vaida’s from around the country and the world — from parents who know their children are suffering and are unable to find solutions where they live.

“Many doctors don’t know of good treatments for tracheomalacia,” Smithers says. “They think the issue will go away on its own, but often, it doesn’t.”

In early April, Vaida and her little sister, Piper, joined their parents for the long plane trip to Florida. Leading up to the trip and upon arrival, they received guidance from the hospital’s International Patient Services team, a full medical concierge service designed to help patients and their families navigate a country and a health system that may be foreign to them.

The International Patient Services team produces a complete medical itinerary for each patient, helping to ensure they know where to go and when, from start to finish, and assisting in everything from medical forms to questions about the area.

“These families travel so far, they’re in a new country and are often dealing with a serious medical situation,” says Cristina Bozenhardt, senior care coordinator with the International Patient Services team. “We want to free them up to be able to focus on their child.”

After a bronchoscopy and other tests for Vaida, Smithers showed her parents what he’d found — scarring on her airway, all the secretions from chronic lung infections, and where the trachea was collapsing.

But this experienced surgeon had a solution. 

Between his decade at Boston Children’s Hospital and his five years leading the EAT program at All Children’s, Smithers had performed about 1,000 operations to repair airway issues like Vaida’s, and he knew how they could improve quality of life. 

On April 10, Smithers performed a posterior tracheopexy on Vaida.

Operating through the right side of her chest, the surgeon removed a tiny amount of her tracheal membrane to improve the trachea’s shape and then sutured a portion of the trachea to the front of Vaida’s spine so that it would no longer collapse.

The surgery went smoothly. Afterward, her parents recall a meaningful moment when Smithers showed the family images of Vaida’s newly opened airway.

“He showed us her trachea from before, and then he showed us her new one,” Lisa said. “I remember Conan reached over and took my hand. … We could see her airway was fully open.”

While still in Florida, Vaida would undergo a procedure to help with her swallowing. After that, she began to truly experience the change in her airway.

She demonstrated to her mom how she could now take a deep breath and feel her chest fill up. She excitedly shared with friends at school that she could run and play without needing medication.

“To see that a child can breathe better, and have fewer respiratory illnesses and hospitalizations, it just improves their quality of life a ton,” Smithers says.

“We’re so thankful, not only to Dr. Smithers, but to the whole hospital and how they treated us,” Lisa says.

“We were amazed by the level of support we received,” Conan adds.

Now back home in Adelaide, Vaida’s life is expanding in all the best ways.

She is more active, with less illness. Recently, she was able to enjoy a campfire and roast marshmallows without any problems with her airway.

Most of all, Vaida is dancing her heart out.

She is working on a solo piece for an upcoming competition — an expressive dance that tells the story of her health journey.

It is sure to be filled with hope.