Photo by John Russell

Whole- Hearted Care

Published on March 4th, 2020 by Christina Echegaray.

Tomara Norton was brushing her teeth in her East Tennessee home when she received a call from Monroe Carell Jr. Children’s Hospital at Vanderbilt.

She thought the Sept. 21, 2019, call would be about her missing ID, which she had left at the hospital the day prior. 

It wasn’t. A match had been found for her daughter, Khori’s, heart transplant.

“When he said he was a member of the transplant team and that they’d found a match, I literally almost fell to the floor. I just started crying. They were happy tears, of course,” recounted Norton.

Khori, 5, had spent the last three months on the transplant list at Children’s Hospital’s Pediatric Heart Institute after suffering heart failure following a “double switch” surgery — or a rerouting of blood flow from one side of the heart to the other and switching the heart’s major arteries — for a rare defect discovered at birth. The surgery was her second open-heart surgery since she turned 2.

Her arrival to Children’s Hospital in June 2019 aligned with the opening of its newly added 10th floor, which moved all inpatient pediatric cardiology services, including the cardiac intensive care unit (ICU) and the cardiology step-down unit, onto the same floor for the first time in the hospital’s history.

The 10th floor opened as the first phase of the hospital’s second expansion since 2004. The expansion involved a nearly three-year, $150 million construction project to create an ad­ditional four floors on top of the hospital — a project made possible by generous community support through the Grow­ing to New Heights Campaign, a $40 million philanthropic effort including gifts from the Carell family, the Country Music Association and many other donors and community partners. 

Khori, affectionately described as both sweet and sassy by her mother, received her heart transplant Sept. 22. She spent four hours in surgery, followed by three days in the cardiac ICU. By the third day, she was up and walking, and she was discharged on Oct. 1 — just nine days after surgery. 

She was back to mothering her baby dolls and sporting her infamous high-heeled shoe collection in no time.

“I wasn’t worried this time. I know how easily Khori bounces back,” said Norton. “It’s harder when you don’t know if your child can make it through something like a transplant, but Khori had already made it through two surgeries and has done so well. I just knew in my heart that she was going to be OK.”

The number of pediatric heart surgeries performed by Vanderbilt surgeons has nearly doubled over the last decade, including an increase in heart transplants. Thanks to the new dedicated space on the hospital’s 10th floor, the Pediatric Heart Institute has the flexibility to provide the best care for all cardiology patients — even amid a flux in volume.

The Big Leagues

The Children’s Hospital’s Cardiology and Heart Surgery program is the ninth largest program in the country and the second largest in the Southeast relative to the number of pediatric heart operations performed, which averages around 500 annually. The hospital’s reputation as a leader in pediatric cardiology has led to an expanded care area that draws patients from 13 regional states, and the number of referrals received from providers across the country has spiked.

“Everyone is used to thinking of us as a good regional program,” said David Bichell, MD, William S. Stoney, Jr. Professor of Cardiac and Thoracic Surgery and chief of Pediatric Cardiac Surgery. “Our national growth is like moving from being on a minor league baseball team to playing in the big leagues.”

Nearly 85% of the Pediatric Heart Institute’s patients are under 1 year old, according to Michelle Acton, RN, MSN, manager of patient care services for Pediatric Cardiology, and the majority have a congenital heart defect, which has a 1-in-100 prevalence. Because these defects often require multiple surgeries, many children return throughout childhood and even into adulthood for continued specialized care.

“Prior to the 1970s, many children with heart problems didn’t survive. Now, patients are not only surviving, but they’re becoming adults with congenital heart disease. That means we need to be there for these adults also,” said Scott Baldwin, MD, Katrina Overall McDonald Professor of Pediatrics, director of the Division of Cardiology and co-director of the Pediatric Heart Institute. 

Growth in patient volume has also led to growth in staff, with the number of cardiologists more than doubling since 2004 from 12 to 26. Even with the space on the new 10th floor, the Children’s Hospital has an average of more than five cardiac patients each day who are housed on a non-cardiac floor. The program already has plans for further expansion.

Because cardiology is one of the few divisions that provides everything from inpatient to outpatient care for both children and adults, having all services housed on the same floor makes it easier for teams to work together.

“Having all of our services housed in one place has always been a dream,” said Baldwin. “It just makes sense when the day-to-day care of our patients is dependent on interactions with multiple divisions.”

A Flexible, Family-Centered Approach

Prior to June, the cardiac ICU was located on the Children’s Hospital’s fifth floor while the cardiology step-down unit was located on floor seven. Patients often moved back and forth between the units as they recovered from surgeries or encountered unexpected problems. 

The new 10th floor consists of 38 beds split into three pods: Pod A houses 15 beds for cardiac ICU patients, Pod C has 15 beds for the cardiology step-down unit, and Pod B, which bridges the ICU and step-down unit, provides eight beds that can be flexed to accommodate both patient populations, providing extra space for either unit when censuses are high.

The setup proves especially helpful for accommodating the program’s seasonal spikes. Patient census is highest during the late spring and summer, as school-age children often schedule their surgeries during summer break. 

Children’s Hospital’s reputation as a leader in pediatric car­diology has led to an expanded care area that draws patients from 13 regional states, and the number of referrals received from providers across the country has spiked. Photo from Anne Rayner.

“What happened was that we didn’t have a ‘one ICU fits all,’” said Bichell. “We needed to have a bigger ICU in the summer and a smaller one in the winter. The new space on the 10th floor gives us the ability to expand and contract.”

The flexibility also means a patient can be transferred between the ICU and step-down care teams without ever changing beds, allowing for enhanced continuity of care and a more seamless care experience in an already familiar environment. 

For families, the new floor also offers a warm, home-like feel with larger rooms, generous views of the city and rooming-in space that offers a curtain for privacy. Each room is equipped with two sleeping surfaces.

The new features represent a continued emphasis on the importance of involving families as members of the child’s care team.

“This has always been a place that realizes we’re taking care of patients, but we also have families attached to those patients. That’s a part of our mission, and I think this newest, greatest thing that we’ve built is keeping that same goal in mind,” said Acton.

The new unit has a dedicated pharmacy, ECMO (or extracorporeal membrane oxygenation) capabilities and updated technology to make care more efficient. Twenty-three rooms are equipped with mobile, critical care booms (a medical equipment column) to allow more flexibility in caring for patients, and the technology is set up for future enhancements. 

Both units also have the potential and training to care for other acute specialty populations if needed when the census is low.

“It’s higher tech, it’s easier to see the information we need to see minute to minute, and it’s better equipped for some of the changes that are on the horizon,” said Bichell.

Collaboration and Innovation

Having all cardiac specialties housed in the same space also makes it easier for the cardiac ICU and step-down units to communicate and collaborate. Because they share the same patients, the relationship has always been strong, but their new shared work environment provides more visibility into the other’s needs.

Sharing a space allows team members to see one another regularly, providing increased opportunities to ask questions and share ideas on cases. Student rounds are also enhanced, as students can see patients in both units to better understand the full inpatient cycle. 

“The proximity of having everyone on the same floor means more people are around to hear, share and experience these patients. Students can see not only how patients look in the ICU, but also their whole process through the hospital up until they’re ready to go home. I think it’s better that way for education and collaboration,” said Bichell.

While teams share a regular weekly meeting to discuss new cases and needs, the cardiologists, surgeons, anesthesiologists, intensivists and other ancillary services rely on each other to make the best decisions for patients daily.

Beyond clinical collaboration, the setup is ideal for sharing new ideas, an important component for fueling research and innovation. 

“We’re not only here to fix baby hearts in a way that we’ve been doing for a long time, but we’re here to figure out new ways to do so. We’re figuring out new ways to detect heart problems before it’s too late, new ways to intervene and ways to reduce the number of surgeries a child may need,” said Bichell.

“We get really innovative thinkers and smart, energetic people, and it increases the whole morale of what we’re doing. You feel like you’re a part of the future. That makes Vanderbilt a pretty awesome place to do what we do,” Bichell added.

Current research focuses at Vanderbilt include understanding the genes that regulate how the heart forms to identify where problems arise, genetic differences that may predict how a patient will react following surgery and identifying factors that can determine whether a patient will survive a transplant. 

“Our mandate is to ‘move the ball down the field’ in terms of improving the care we provide, not just settle for being the best we can be today,” said Baldwin. “We need to define the future for optimized care of congenital heart disease patients, and this is done through research.”

Paving the way forward, however, still isn’t as rewarding as providing successful outcomes for the tiniest patients.

“When an infant has a heart problem, that’s a bigger event in someone’s life than a wedding or a graduation,” said Bichell. “There’s nothing that frames all of that better than having these children grow up and come back and send you Christmas cards. When they send me pictures of themselves on the soccer team, they might not have had that opportunity if they hadn’t had a whole team thinking about them as an infant. What’s more gratifying than that? How many jobs have that as a result?”

A Floppy-eared Future

For Norton and Khori, the four-hour journey to Nashville was overwhelming at first, but the dedicated staff in the PediHeart Institute quickly became like family. Khori even made friends with country music artist Kix Brooks, co-chair of the Growing to New Heights Campaign, during her time in the hospital. 

“The nurses here love Khori. She’s like a celebrity. She’s the queen of 10C,” said Norton. “They spoiled her more than we spoil her.”

Khori particularly connected with Taylor Bay, RN, a nurse resident, over their secret handshakes and dance routines.

“Khori is not like any other 5-year-old I have ever met. She has a spunky and sassy attitude that can brighten anyone’s day, and if that doesn’t do it, then her love for music artist Luke Combs or TikTok (a video-sharing phone app) sure will,” said Bay. “Khori and her family have made such a positive impact on my life and my job. I am forever grateful this sweet, strong, amazing little girl and her family crossed my path.”

For Norton, the best thing about the care Khori received was the peace of mind knowing that she was always in good hands.

“We never had to worry about whether Khori would be OK, even if we had to run to the grocery store,” said Norton. “We love this place, and I wouldn’t pick another hospital for her to be at.”

Now that Khori’s inpatient stay is over, she has big plans for her arrival home.

“What are we going to do when we get home?” Norton asked Khori on her final day in the step-down unit.

Khori, without hesitation: “Get a puppy.” 

Her preference? “A baby puppy with floppy ears.”

– by Kelsey Herbers