Story by: Joe Hall on November 14, 2023
As doctors, nurses and staff lined the lobby of Norton Children’s Hospital to say goodbye, Thomas Norris had a big reason to smile. After almost a year of waiting and more than 100 days in the hospital, Thomas left Norton Children’s with a new heart.
Thomas, a 9-year-old from Jeffersonville, Indiana, was born with dilated cardiomyopathy, a genetic disorder that causes the muscles of the heart to become weak.
“He was 8 days old, and we noticed his breathing was off,” said Katherine Norris, Thomas’ mother. “So for about eight years we were just kind of steady, stable, quarterly appointments.”
Thomas had been living a pretty normal life with medications and doctor appointments. He even played two seasons of soccer, but eventually had to return to the hospital as his condition worsened last fall.
“In October we went for just another follow-up, and they said it’s time to list him for a heart,” Katherine said.
Thomas was put on the transplant list Nov. 1, 2022, and was admitted into the hospital in the summer of 2023. While he waited for a transplant, surgeons installed a heart pump to keep Thomas going until a new heart became available.
“It’s a device that is designed for adults and has been placed in children before, but not as small as Thomas,” said Bahaaldin Alsoufi, M.D., chief of pediatric cardiothoracic surgery at Norton Children’s Heart Institute, affiliated with the UofL School of Medicine. “So according to the device manufacturer, he might be the smallest child who has received the device. He’s also the child who used the device the longest—in his case, 61 days.”
On Oct. 15, the call Thomas’s family had been waiting for finally came. Thomas would receive a new heart the following day.
“I am pretty sure everyone feels unexpected when they get that phone call, but it was nice when we got off the phone,” Katherine said. “It was like, it’s finally here. It was exciting too, because there’s a light at the end of the tunnel.”
The surgery gave Thomas a new lease on life but also marked a milestone for Norton Children’s. Thomas became the 100th patient to receive a heart transplant at the hospital. In 1986, the Norton Children’s became the second hospital in the nation to perform a heart transplant in an infant.
Since then, Norton Children’s Heart Institute has grown into a full-service program featuring a specialized team of cardiovascular and transplant surgeons, cardiologists, fetal heart specialists, and other caregivers dedicated to heart patients and their families. Norton Children’s Heart Institute is among the top 50 pediatric heart programs in the country, according to U.S. News & World Report.
“I think it’s a testimony of how far we have come as a program and how well we have taken care of patients to get this far,” said Sarah J. Wilkens, M.D., medical director of pediatric heart failure and transplant at Norton Children’s Hospital.
After spending 103 days hospitalized, Thomas was given a special send-off at Norton Children’s Hospital on Halloween. As he walked out of the hospital Oct. 31, doctors, nurses and soccer players from Lou City FC — Thomas’s favorite team — lined the hallway holding balloons, shaking ribbons and cheering him and his healthy new heart.
Katherine said the family will be navigating new medications and other changes like letting Thomas sleep in his own bed again. They are finally making plans as a family.
“Eventually, once he’s allowed to travel, we’d like to go on a family vacation and just be together again,” she said.
But the first thing Thomas wanted when he got home was spaghetti for dinner. And that’s exactly what he got.
“He cleaned his plate,” Katherine said.
The Norton Children’s Hospital Foundation recently provided $388,912 in support of pediatric cardiology at Norton Children’s Hospital. Funding was provided for a new pediatric cardiology bus. The pediatric cardiology outreach team will use the bus to transport the team and diagnostic equipment throughout Kentucky and Indiana. The team serves over 6,000 patients at 16 locations throughout these two states.
The funds also will be used for a CryoConsole, high-tech electrophysiology equipment that uses cryotherapy, as well as heart mapping technology that can keep some children from requiring a permanent pacemaker after heart surgery. Norton Children’s is one of only a few cardiac centers to use this equipment.
“Our heart program has a deep legacy that has grown and impacted the lives of children from all across our region,” said Lynnie Meyer, R.N., Ed.D., FAHP, CFRE, senior vice president and chief development officer, Norton Healthcare and Norton Children’s. “This work is simply not possible without the deep support of our entire community. I think about the countless people involved, and the resources we’ve been able to devote to ensuring these children and their families have hope for the future. We have a deep gratitude for what we have here at Norton Children’s Hospital.”