Like all St. Jude patients, there’s a lot to admire about Kai Stallworth.
He’s happy, silly, playful and affectionate. Despite the challenges he faces from his diagnosis, he continues to exude that same level of youthful energy that inspires those around him.
Kai, who recently started pre-K, was found to have hereditary elliptocytosis in September 2019. This hematological disorder requires frequent monitoring and occasional bloodwork due to the 4-year-old’s tendency to experience a drop in an already low hemoglobin level. Kai’s mom, Whitney Ball, who is studying to become a licensed practice nurse, said her son could become fatigued or experience a decline in appetite at any time.
“Kai doesn’t take any medication for the elliptocytosis,” Ball said. “It’s just one of those things that he has to live with. Now, thanks to St. Jude, I know what to watch for.”
Though not critically ill, Kai needs a St. Jude checkup every six months to one year, which, prior to July 2021, required a two-hour drive from his home in Tupelo, Mississippi, to the hospital’s campus in Memphis, Tennessee.
With help from the St. Jude Hematology Telehealth service, Kai has been receiving the same quality of care from St. Jude doctors and nurses over the past year without leaving his hometown in North Mississippi.
The St. Jude telehealth clinic is located at the Le Bonheur Children’s Outpatient Center in Tupelo. St. Jude leases space at the facility and is able to provide resources for an onsite telehealth presenter, who helps connect patients and parents like Kai and his mom to St. Jude care providers in Memphis via telehealth.
“Kai could be seen via the telehealth program since his situation wasn’t a critical one,” Ball said. “It’s been a major convenience to go to the Tupelo clinic because when we get there, it’s all set up. We go into a room and talk with Ms. Tracy and another doctor from St. Jude on the computer.
Although Kai’s condition is not critical, telehealth is often used collaboratively with patients and their local providers in crisis situations to help stabilize a patient more quickly and help make decisions about transfer or to keep the patient local.
Kai’s nurse practitioner Tracy Tidwell of St. Jude Hematology has been caring for Kai since the hospital began offering telehealth services to patients at the Tupelo clinic.
“We’re like one big family,” Tidwell said. “I have some stories in my heart of things that have changed in these children’s lives that are priceless to me, and nobody can take that away. At the end of the day, that’s what it’s all about.”
Ball appreciates this passionate approach that Tidwell takes when caring for Kai.
“Ms. Tracy cares about what’s going on with Kai, and she cares about making sure that I know what’s going on with him. That information is helpful because when anybody asks me, I can tell someone else about Kai’s condition,” Ball said.
Kai was born premature at 28 weeks and experienced anemia and jaundice at birth. He received two transfusions in the newborn intensive care unit. During a well-child visit at about 1 year old, clinicians determined he had a persistent microcytic anemia.
Kai’s hemoglobin levels were unbalanced, so his pediatrician referred him to St. Jude. A genetic panel revealed that Kai had hereditary elliptocytosis. Kai’s father, Arnil Stallworth, has a genetic marker for the condition but has no issues. Ball also was found to have a genetic marker for the blood disorder that aligned with Kai’s marker.
Along with monitoring his hemoglobin level, Kai’s checkups are helpful for assessing the size of his spleen, which Ball said can become enlarged due to his condition.
“During the telehealth visit, they showed me how to palpate his spleen to see where it’s located because it extends down a little bit past the ribcage, which is a sign that it’s enlarged,” she said. “During his last doctor’s visit, though, the enlargement was barely noticeable, so that’s coming along a bit better.”
Nina Antoniotti, RN, PhD, St. Jude director of interoperability and patient engagement, said the beauty of telehealth is that Tidwell can watch as the parent practices this type of exam.
Ball said the location of the St. Jude telehealth clinic provides a convenient way to get Kai the care he needs while providing her the flexibility she needs as an adult college student.
“When we go to Tupelo, we’re in and out within less than an hour most of the time. The clinic staff is really flexible, which has been helpful with me being in school,” she said. “When they do his ultrasounds, they turn the TV on to Mickey Mouse, and Kai is able to just lay back and watch. It’s like he doesn’t even realize he’s being looked at.”
Antoniotti said creating a comfortable environment for patients and families is a top priority for the telehealth team.
“Ensuring that our patients feel as though they’re at St. Jude really is the skill of the clinician, and our Telehealth team has a real commitment to making telehealth work,” she said.
Rohith Jesudas, MD, who joined St. Jude in October 2020 and is licensed in both Tennessee and Mississippi, said the idea of St. Jude offering telehealth services to Tupelo area patients originated with Ellis Neufeld, MD, PhD, St. Jude executive vice president and clinical director.
Many patients in the Tupelo area were missing an entire day of school to commute to St. Jude for a checkup and monitoring. The telehealth clinic ensures that patients are in school as much as possible with limited disruptions.
“Our telehealth clinic services also help remove the burden on parents and caregivers because instead of having to miss a whole day’s work, their employers are a lot more willing to send them on an extended lunch break to get their children the care they need,” Jesudas said.
Jesudas, Tidwell and Antoniotti are proud of the role that the Tupelo telehealth clinic is playing in strengthening patient support infrastructure for children with chronic hematological diseases, an initiative of the St. Jude Strategic Plan.
“The initial baby step was to get this clinic rolling and get buy-in from patients, which we have. Our next step is maximizing the services we are providing. How can we serve all eligible patients with the time we have each day? How can we lessen the disruption in patients’ daily activities? What other services do we provide at St. Jude that can be provided in Tupelo?” Jesudas said. “Those are questions we are asking ourselves because we can push the boundaries further in a way that aligns with the institution’s goals for utilizing telehealth.”
Jesudas agreed that providing telehealth services on behalf of St. Jude is a joyful experience.
“We’re excited about the one year that we’ve been providing this clinic, and I think the more exciting part is what is yet to come,” he said. “We’re excited about this venture that St. Jude has taken to make care more accessible to our patients.”