Madisyn (Madi) Van Tull, 4, at the celebration of her discharge after nearly three years of care at Monroe Carell Jr. Children's Hospital at Vanderbilt. (photo by Susan Urmy)
Early childhood is often shaped by community, family and the simple joys of books, birthday celebrations, music, movies, play and more. For Madisyn (Madi) Van‑Tull, those joys came wrapped in hospital gowns and medical routines.
For nearly three years, Monroe Carell Jr. Children’s Hospital at Vanderbilt was her community and home, where she was surrounded by a surrogate family of doctors, trainees, nurses, care partners and a variety of therapists.
Diagnosed with a rare and serious condition, congenital nephrotic syndrome, Madi was admitted to Monroe Carell just after her 1st birthday due to health-related complications, including a stroke from sepsis. The syndrome often appears in the first few months of life and causes swelling and protein loss in the urine. Her earliest days were marked by low blood protein, swelling around her eyes, face and legs, and the need for specialized treatments like albumin infusions and diuretics.
While Monroe Carell health care teams aim to discharge children home as soon as it is medically appropriate, some children like Madi have complex medical needs that require longer hospital stays. Teams focus on comprehensive, quality health care to treat various conditions while also providing wraparound services to care for the whole child and to support the family.
“We saw so much resilience in Madi,” said Rene VanDeVoorde III, MD, Director of the Division of Pediatric Nephrology and Hypertension and Associate Professor of Pediatrics. “There were times we worried about how she would recover. She always would, but it took her a while to get there. She is so social, and you knew when she was really happy — she would click at you, which was her way of blowing kisses. She has touched the lives of everyone she met along the way.”
After her three years at Monroe Carell, the team celebrated Madi’s discharge — a well-choreographed, planned departure from the hospital to allow her to go home to her family, siblings, cousins and aunt, in upstate New York. The team knew the momentous occasion called for a special celebration, a New York-themed party with stickers, magnets, pens and party favors.
Madi, sitting in her pink high chair, was surrounded by a host of care team members from nursing, child life, music therapy, physicians, dialysis techs, medical receptionists, and so many more people. Because pink is her favorite color, team members donned pink clothing in her honor.
A village of caregivers
Madi’s journey to go home was long and complicated, yet it showcased what happens when Monroe Carell medical, surgical and nursing care teams from different disciplines, expertise and experiences collaborate in patient care. She was surrounded by a village of caregivers.
“It took many coordinated teams, working together to make sure all her needs were met — any specialty you can imagine,” said Jessica Binkley, MSN, RN, CPN, Manager of Monroe Carell’s Pediatric Medicine and Acute Care Unit (PMAC). “We made sure we cared for her physical needs and developmental needs but also her social and emotional needs. When you think about a child being in the hospital for so long, everyone was intentional about making sure she could socialize and that she was engaging and not just in a bed all day.”
Madi faced an extraordinary series of medical challenges. During hospitalization, she had periods of severe illness, and at first received peritoneal dialysis, then had a bowel obstruction requiring a resection of her intestines. Following the resection, she was switched to hemodialysis for continued kidney support. Her first attempt to go home was delayed when she had severe pancreatitis, causing several health setbacks.
“You could always tell when Madi wasn’t feeling well,” said Allison Brackey, RN, who cared for Madi for much of her inpatient stay in PMAC. “It was hard to see her really sick when she was first admitted. But then she got to a point where was ‘normal’ and could eventually go home. Getting to see her grow up was really special. It was bittersweet to see her go, but I’m so glad she finally gets to be home with family.”
Her care required intense communication and coordination. Madi underwenthemodialysis three times a week for several hours, and various teams adjusted their schedules around each other to ensure she received therapy, feeds and treatments. She also had a salon day.
“Ms. Rene Odom, her care partner, would give her a spa day, making sure her hair was done, and that her laundry was finished and wardrobe organized,” Brackey added.
Photos of Madi taken by staff during her time at Monroe Carell
Matt Bane, RN, also a PMAC nurse, noted Madi’s vibrant personality and love for music, including the “Trolls” movie soundtrack. Her face lit up when she was happy, and she was known for her infectious giggle. The team knew her favorite movie was “Frozen,” and they helped create a “Get to Know Madi” book so new caregivers could easily learn her likes and dislikes. She did not enjoy having her teeth brushed.
“It’s rewarding seeing kids like Madi, especially when they get to go home,” said Bane. “Sometimes health care can be stressful, seeing kids sick, and then you get to see them rehab to where they’re walking, talking and everything else — that’s the reason why we do what we do. It’s just amazing.”
Residents were also fond of Madi, who for many of them had been inpatient during their entire residency. She even wore a tiny cap and gown when the team made her an honorary part of residency graduation festivities, said Amanda Williams, MD, Pediatric Chief Resident.
“She taught so many people so much medically because she was here so long, and because she had so many complex issues,” Williams said. “She kept you on your toes. Seeing her progression through the years — we don’t often see what’s next — we got to see that with her and how she gained more abilities.”
“Most of us go into medicine because we want to help kids like Madi, and to help them get better. To see her progress and to go home where she is loved by family — I think that is the goal any physician has. Ultimately, it’s to know a patient is doing well and is surrounded by people that care about them in a healthy environment,” Williams added.
Madi is now home surrounded by her family and siblings. Her aunt, Linda Crummell, says Madi has taken to being home and that she continues to bring joy to everyone around her.
“Everyone enjoys Madisyn’s smiles and little giggles she makes when she hears us singing and her brothers dancing,” Crummell said. “I want to express my deepest gratitude to the incredible team at Monroe Carell Jr. Children’s Hospital at Vanderbilt. The doctors, nurses and staff cared for her. My family and I are so happy that Madisyn got the care and love from all the staff at Monroe Carell. “Three years in a hospital bed could not stop God’s plan for Madisyn. Surrounded by family, love and endless possibilities, she is improving every day. Her progress is measured not only in milestones, but in the joy she brings to everyone around her.”
