Two-year-old Taytum has a lot to say.

In her bright red dress and sparkly shoes, she charms friends and strangers alike as she chats and poses for photos on the sunny walkway leading into Johns Hopkins All Children’s Hospital in St. Petersburg, Florida.

“She is a hoot,” says her mom, Maggie. “So funny and smart. She talks more like a 5- or 6-year-old than someone who is 2.”

This is Taytum’s first return visit to Johns Hopkins All Children’s since she was an infant.

It was important to Maggie and to Taytum’s dad, Connor, to bring her back here. They want to help their little girl begin to understand how far she’s come, and to show her that her vibrant health — indeed, her very life — is a triumph.

Difficult Beginning

Taytum entered the world on a bright spring day in 2022.

Looking back, it seemed almost too easy. Maggie enjoyed a smooth pregnancy and then an uncomplicated labor as she and Connor welcomed their beautiful “honeymoon baby,” into the family. 

The following day, there was joy all around as they prepared to take their baby home from the small regional hospital. 

Mom and dad packed up their things as the grandparents got the car ready.

But then — in a flash — the mood changed.

A nurse entered the room. With tears in her eyes, she said, “We found something wrong with your baby’s heart.” 

“Everything went from being so joyous — to me on the floor sobbing,” Maggie says.

Their newborn urgently needed a higher level of care.

Taytum was transported to the neonatal intensive care unit (NICU) at Johns Hopkins All Children’s Hospital, where doctors confirmed a life-threatening congenital heart defect.

An atrioventricular (AV) canal defect is a large hole in the center of the heart caused by a combination of problems with the heart’s structure. Essentially, the center of Taytum’s heart did not form normally. The condition makes it hard for the heart to pump effectively to meet the body’s needs.

AV canal defects are often detected prenatally in routine scans, but not always.

“Some of these patients over time have what we call ‘overcirculation’ — too much blood that goes to the lungs and not enough that goes to the body,” says Michelle Miller, M.D., a pediatric cardiologist with Johns Hopkins All Children’s.

Babies with AV canal defects can often be treated with medication and monitoring until they can grow a little bigger and their heart tissue is mature enough to undergo a durable surgical repair — ideally at about 4 months of age.

That was the hope for Taytum. She was discharged from the hospital about a week later and continued to receive follow-up care with Miller, her cardiologist.

But in the ensuing weeks, the baby proved to be struggling. She had a difficult time eating and putting on weight. Her little body and heart were simply working too hard to allow her to thrive.

Doctors needed to know more about Taytum’s heart.

Later that month, she underwent a diagnostic cardiac catheterization, performed by James Thompson, M.D., a highly skilled and experienced pediatric interventional cardiologist at Johns Hopkins All Children’s.

Thompson was struck by the level of overcirculation in the baby’s lungs.

“Taytum had about four times the normal amount of blood going through her lungs,” Thompson says.

To help her gain weight, doctors started the baby on NG feeds (a tube inserted through the nose).

But it was becoming clearer that managing Taytum’s symptoms of congestive heart failure with medications, monitoring, and even the additional nutrition, may not be enough to get her strong enough for her repair surgery.

In very severe cases of overcirculation, pediatric cardiovascular surgeons have commonly opted for an additional surgical procedure known as pulmonary artery banding (PAB), where a band is placed around the main pulmonary artery to reduce excessive blood flow.

But that would mean two major open surgical procedures for this baby — first, the more urgent surgery (PAB), and then the scheduled heart surgery at 4 months of age to repair the AV canal defect. 

Flow Restrictors

Were there any other options for this fragile infant?

Thompson thought there might be. He had been learning about a new technological innovation that a few interventional cardiologists around the country had begun to use successfully.

Instead of a second surgery, Thompson proposed a catheterization procedure to place devices called pulmonary artery (PA) flow restrictors into the infant’s arteries. In this case, the interventional cardiologist would use vascular plugs, which are delivered through the large vein in the leg and guided up into each artery. 

The device expands like a tiny umbrella inside the artery to block blood flow. But for Taytum, a small hole would be made in each device to allow some blood to circulate into the lungs, although far less than the excessive amount that was causing her to struggle.

As the family weighed their options, there was something else to consider. While Thompson had decades of knowledge and experience with pediatric heart catheterizations, Taytum would be the first patient at Johns Hopkins All Children’s to receive the flow restrictors. 

Thompson was confident it could make a difference for their little girl.

“Everything we do is to give these children and their families the very best outcomes and the best life possible,” Thompson says.

Taytum’s mom and dad liked the idea of lowered risk with only one major surgery instead of two for their baby. They put their trust in the care team and together, the decision was made.

On a day in late May, Thompson deftly guided the catheter into Taytum’s heart, through the right ventricle, and out to the pulmonary artery, which goes into the lungs to deliver oxygen. He placed a flow restrictor device into each lung artery.

The procedure went smoothly and within a week, the baby was discharged. 

Now Taytum needed time to adjust to the more balanced level of circulation and to benefit from it.

Her heart no longer had to work as hard to pump blood to her body. 

Her breathing improved.

Very gradually, she began to put on weight.

In early August, this strong and determined infant was taken to the operating room for her repair surgery. 

The Pediatric Heart Surgery Team, including co-director of the Heart Institute, James Quintessenza, M.D., removed the flow restrictors, successfully closed the large AV septal defect and fully repaired Taytum’s heart.

Healing

After her repair surgery, the signs of improvement for Taytum were almost immediate.

The following morning, a nurse in the cardiovascular intensive care unit (CVICU) informed Maggie that Taytum drank three to four bottles overnight … something she had not been able to do before.

And when Taytum’s grandfather visited her in the CVICU, there was another hopeful sign.

“Taytum just started babbling to him,” Maggie says. “She had never done this! She never had the energy to do the baby cooing or ‘talking.’” 

Within a few days, Taytum left the hospital with a fully functioning heart.

Since then, she has barely looked back as she has gained weight and hit developmental milestones with remarkable speed.

Today, she is a happy, thriving toddler, curious about her world — and with the vitality to explore it.

Looking back on those first difficult months in and out of the hospital, her parents are grateful for her progress.

“Connor and I are blown away by the care from the staff that we received,” Maggie says. “Everybody became family. We still talk about what an incredible support system All Children’s was for us.”

Thompson has since performed close to 20 procedures using flow restrictors, benefiting children diagnosed with a variety of heart issues.

Little Taytum has helped to raise the bar.

Maggie thinks she just might become a doctor one day.