Eleven year-old Jimmy of Jackson, Missouri is a kind, funny and active young man. An avid and well-decorated golfer, Jimmy was playing in a tournament in early August of last year when we came off the course and got sick. “He recovered and went on to play two more games,” says his mother, Shana. “But it was odd because he never gets sick.”
Later that month on his first day of school, Jimmy had to miss his final period of the day due to another bout of nausea and vomiting. On August 23, 2019, Jimmy and his family traveled to SSM Health Cardinal Glennon Children’s Hospital for evaluation. Within a few hours of their arrival, they had a diagnosis. “When a doctor reaches out to hold your hand before they talk to you, you know something’s not good,“ stated Jimmy’s father, Jim. Jimmy was immediately admitted with a diagnosis of pediatric cardiomyopathy, meaning that he had an enlarged heart.
Kenneth Schowengerdt, MD, Director of Cardiology and SLUCare physician at SSM Health Cardinal Glennon states, “There are various forms of cardiomyopathy. In Jimmy’s case, he has abnormalities of the muscle proteins of the heart, so the heart muscle cells don’t contract fully or normally and the heart becomes weakened and enlarged over time.”
When Jimmy was diagnosed, the family set up the Jimmy Williams’ Prayer Warriors Facebook page to ask for support and to update everyone on his progress. Shana said, “It’s important we help spread the message of pediatric cardiomyopathy to help others… It’s often found too late. Jimmy almost died before we got to Cardinal Glennon,” Shana said. “We took him to the doctor several times and they never thought once to look at his heart. Kids that have pediatric cardiomyopathy normally show signs similar to asthma, which that was what they were treating Jimmy for initially. Then he got progressively worse.”
After the diagnosis, Shana remembers a constant stream of monitoring, tests, many new faces and tons of medical language the family never thought they’d be exposed to. “Jimmy was in heart failure, and on August 27, he was placed on the heart transplant list,” said Shana.
On August 29, Jimmy had open heart surgery to place an LVAD (Left Ventricular Assistive Device) to get his left ventricle pumping correctly. “Jimmy’s surgeons were able to successfully place the LVAD and the right ventricle began to function without assistance, but they also found a lot of scar tissue. This meant the chances of the heart recovering on its own were decreased,” said Shana.
“During Jimmy’s LVAD surgery, one of his nurses, Mary Grace, would come out and update us as the day went on. And not just, ‘Jimmy’s doing great.’ She thoroughly explained how the surgery was going, what the next step was, what we should expect, and even discussed what each step meant for the future. Each time, she did so with such reassurance and kindness,” said Shana. “There are so many people who have helped care for Jimmy. They have been wonderful, but I am not sure if ‘wonderful’ is a strong enough word. These nurses show up day after day to do a really tough job, taking care of the most critical kids. But to them it is more than a job. They care about these kids so much. They think about them even when they are not at work. In fact, Mary Grace purchased a game for Jimmy when she was Target because she knew he would like it and it would be a great tool for his therapy. The staff have lifted us up when we needed it most. We have been shown so much compassion.”
After the LVAD placement, Jimmy would need to carry a backpack with him at all times that held the battery for his LVAD. This wasn’t the permanent solution, either. It was just one part of the phases for Jimmy’s heart. “We knew we were looking at a heart transplant. He was on more equipment than the space shuttle,” stated James, “but he never showed signs of fear.”
Jimmy’s days in the Pediatric Intensive Care Unit often started when the surgeon and doctors made their 6:00 am rounds. Jimmy would ask them to open the door so he could listen and join the discussion. Around 9:00 am the attending physicians began their rounds, and Jimmy got in his chair and maneuvered himself to where he could hear better. He wanted no secrets and the medical staff always cooperated.
Until Jimmy could receive a heart transplant, the plan was for Jimmy to get his body stronger and ready for a new heart. His muscle strength, activity tolerance, and his walking, all continued to improve. Slowly but surely, Jimmy gradually lost tubes and wires. As Jimmy’s strength improved, his typical day consisted of physical and occupational therapy, family and friends stopping by to visit, therapy dog visits, school five days a week, and small breaks to hang out in the game room. All of this was in addition to regular nurse checks, meals, medications and much-needed rest breaks.
Jimmy’s hospital teacher, Shelley, also began coordinating with Jackson R-2 middle school so Jimmy could keep up with his peers. “This was big to a fifth grade boy,” said Shana. “It may not have been exactly the same as being there, but he was keeping up with his friends and didn’t feel left behind.”
“As weeks went on, our goal was for Jimmy to be discharged from the hospital while we waited for the transplant. We signed a six-month lease on an apartment about two and a half miles from Cardinal Glennon and his doctors were on board with Jimmy being ‘home’ with us. The staff worked extensively to train Jim and me on the LVAD – the equipment, the monitoring, the dressing changes – everything associated with it. They also trained the EMTs in the area just in case an emergency arose, and we received a refresher course on CPR… So many things had to align in order for Jimmy to leave the hospital. It was scary and overwhelming, but it would be so worth it to have Jimmy home with us,” Shana said.
Jimmy was discharged on September 23 and spent the next several weeks regaining a “semblance of normalcy,” Shana said. He still reported to Cardinal Glennon for school five days a week, in addition to bloodwork and some therapy sessions.
On December 11, after being on the transplant list for 101 days, the Williams family received the long awaited news that a heart was available. Surgery was then scheduled for 5 pm on December 12.
In the wee hours of December 13, after a long 13 hours filled with prayers, worries and waiting, Jimmy’s surgery was complete. “Jimmy rocked this surgery like we knew he would,” Shana said. “We were on our way to recovery and we weren’t looking back.” A heart biopsy on December 26 gave Jimmy’s family a belated Christmas gift – no signs of rejection! On December 27, just 16 days after transplant, he was discharged.
Jimmy and his family continued to live temporarily in St. Louis to be able to visit the hospital for tests on a frequent basis as Jimmy continued to improve. On December 28, he had his first gym workout and on New Year’s Day, warm temperatures allowed Jimmy to take his first trip back to the golf course!
On January 5, Jimmy resumed his hospital-based schooling. Throughout his entire time at the hospital, Jimmy maintained an A+ average on his report card. “He couldn’t have done this without the help of the awesome teachers at Jackson R-2 middle school and Shelley at the Shining Star School,” Shana said.
A second biopsy on January 14 again showed no signs of rejection. “Every time he has no rejection he’s more likely to have no rejection in the future, which means the heart is making itself comfortable in its new home,” Shana said. On January 15, the Williams family said their goodbyes to St. Louis and traveled home to Jackson, Missouri.
James and Shana are passionate about sharing Jimmy’s story. “We want to bring hope and inspiration to people, share about organ donation, and raise awareness about cardiomyopathy,” Shana says. Appropriately, on February 1, the very first day of American Heart Month, Jimmy’s story was shared at SSM Health Cardinal Glennon’s Heart & Soul Event, which benefits the Dorothy and Larry Dallas Heart Center.
Jimmy and his parents expressed their gratitude to Cardinal Glennon and to all that helped him along the way. After an emotion-packed video capturing Jimmy’s journey, and a beautiful speech, the family presented a $4,500 check to SSM Health Cardinal Glennon Children’s Foundation, representing funds raised by Jimmy’s family and friends.
“None of this would have been possible without all the prayer and support we’ve received, and the selfless act of the donor’s parents,” said Shana. “May God bless their souls. I think of them every day.”
Jim adds, “He’ll take good care of that heart, and we will take the best care of him.” Shana adds, “We know that we have a long road ahead of us still but it’s nothing that we cannot handle. We would go to the ends of the earth for Jimmy.”