By Emily Williams
Within the walls of UAB Hospital, there is an organization that has remained unintentionally hidden from the eyes of the general public: the Pediatric Heart Transplant Study Foundation.
The Birmingham-based nonprofit is preparing to host its first fundraiser, Hearts After Dark, Sept. 29 at Iron City.
Brittany Wilk, the brains behind the event and the organization’s programs manager, said she is ready to introduce the organization to the surrounding community.
“This is kind of going to be a relaunch for us,” Wilk said. “We’re using this event to show everybody who we are and start building some new relationships in our city.”
The nonprofit serves to fund its namesake, the Pediatric Heart Transplant Study, an international database of pediatric heart transplant research and cases that seeks to make the world of pediatric medicine a little smaller in regard to heart transplants.
According to the study’s data, more than 500 pediatric heart transplants are conducted each year. In 2015, 456 of those transplants were performed in the United States and eight of the operations took place at UAB. As of Aug. 8, the study had gathered data from 5,905 transplants since its inception in 1993.
“This information helps our doctors and nurses learn how to better care for our kids,” and reduce the risk of rejection, Wilk said.
In addition to the threat of rejection, Wilk noted that many pediatric heart transplant patients outgrow their first transplanted organ and have to undergo at least one, if not more, transplants throughout their childhoods.
“It’s all about making each heart last longer,” Wilk said. “The study tracks a patient from the day they are listed for a heart donation and continues to gather data long after their transplant. There are only two ways we stop tracking a patient and those are either death or adulthood.” Once they hit a certain age, a patient graduates to a similar research study that focuses on adult transplant patients, Intermacs.
Living with a transplanted heart as a child is an ongoing struggle, Wilk said, the risk of rejection after one year is 30 percent, and recovery for a child after a heart transplant is a long road for both the patients’ families as well as their physicians.
“Because the transplant patients spend a long time in the hospital, we get to know them and their families quite well,” said Dr. Wally Carlo of Children’s of Alabama. “I believe it reflects well on our team of doctors and transplant coordinators that we inevitably grow close to these patients and families. In some ways, we become like family. Their medical condition is so complex that they rely on our team for medical, physical, social and emotional support.”
A former UAB pediatric transplant patient, Jeanne Anne Love was so inspired by her transplant experience that she has since pursued a career in cardiothoracic research.
At age 11, Love had a heart transplant at UAB by Dr. Jim Kirklin, who serves on the foundation’s board of directors.
“Heart transplantation gave me the gift of life, including my husband and our beautiful little boy. I am forever grateful to my donor family, Dr. Kirklin and the research made possible by the Pediatric Heart Transplant Study for this incredible blessing,” Love said.
Love works for the James and John Kirklin Institute for Research in Surgical Outcomes under UAB’s Department of Surgery. At the Hearts After Dark event, she will share her story as a keynote speaker.
The fundraiser will be held from 6:30 to 9:30 p.m. and includes music by the Derek Sellers Band, beer and wine, food provided by the Iron City Grill and a wide selection of auction items. Tickets are $60 for individuals or $105 for a pair.
For more information, visit phtsfoundation.org.
