Posted on Feb 07,2017
“Maddie is blessed to have the Pediatric Cardiac Transplant Team and other innovative specialty teams caring for her at Johns Hopkins All Children’s Heart Institute over the last decade.” - Melanie, Maddie’s mom
While many teenage girls will happily tick off their favorite Instagram posts or all of the clubs they are in at school, Maddie is more likely to list out the number of beating hearts that have echoed inside her chest (three) or the hundreds of echocardiograms, multiple heart attacks and the many nights she has spent in the emergency room.
That isn’t just because she’s a life-long, two-time high-risk heart-transplant cardiac patient ... but because the medical field has captured her interest and after spending so many years, so many days and nights at Johns Hopkins All Children’s Hospital, most staff know her by name. Maddie isn’t just a patient, she is a Medical Explorer, which means she comes to the hospital with other teens to learn more about the medical field that she plans to enter. Maddie is also on the hospital’s Family Advisory Board, because as an “expert” patient, she has much to offer by way of suggestions for hospital staff.
Against steep odds, Maddie—who has been at high-risk for rejection since birth—just received her second new heart at Johns Hopkins All Children’s in 2016. (You may have read about her during 2016 Heart Month right before her latest transplant.) Her first transplant was done when she was 5 in St. Louis. It isn’t unusual for children to require a second transplant as they grow and Maddie’s was put off as long as possible. There have been some complications this time around—they expected as much—but Maddie and her supportive mom and dad Melanie and Craig—have dealt with them.
“This new heart does feel different,” Maddie, 16, says after giving it some thought. “It is different in the sense that I can do a lot more. I can play some sports, run, go up the stairs and all that without getting tired anymore.”
Though she can’t play just yet, Maddie joined the lacrosse team at Calvary Christian High School, as team manager. She knows there are a few challenges she has to dance around, but it has never once stopped her from doing what she wants to do. She also constantly seeks ways to raise money for her hospital including fundraisers through school and church. She has raised more than $50,000 in 15 heart walks and shared her story on Radiothon, an annual hospital fundraiser.
“Maddie loves life,” her mom explains. “She wasn’t even supposed to survive this long. But she does what needs to be done to stay healthy.” And that is a lot. For a while, Maddie took 52 pills a day. Every day. She is now down to 29. She comes in for regular checkups like her heart biopsy next month. In spite of that diligence. Maddie is, as her mom puts it, “in rejection.”
Organ rejection was to be expected considering her risk factor. Typically a patient needs to have no higher than 30 percent rejection antibodies in order to receive a new heart, but Maddie has been at 100 percent since birth. Because of the high antibody count, Maddie requires steroids to fight the rejection. They have worked so far, but at a price. The steroids damaged her kidneys, adding to her complications. She was on dialysis for a while and spent more than 8 months in the hospital this past year, but she is improving and back in school thanks to expert care from her cardiac team, which collaborates regularly on her care and constantly seeks out the most innovative treatments that will keep a high-risk patient like Maddie in top shape.
Most hospitals would not have taken Maddie’s case, but as a U.S. News & World Report Best Children’s Hospital in Cardiology and Heart Surgery, Johns Hopkins All Children’s accepts high-risk patients that other hospitals won’t.
“Johns Hopkins All Children’s Hospital is the only hospital in Tampa Bay and Orlando that performs heart transplants on children,” explains Jeff Jacobs. Jacobs is chief of the division of cardiovascular surgery and director of the Andrews/Daicoff Cardiovascular Program at Johns Hopkins All Children’s Heart Institute. “We have performed 176 heart transplants since 1995. Because of our extensive experience, we offer transplantation to many high risk patients who may not have the opportunity to undergo transplantation at lower volume programs.”
Melanie and Maddie love their physicians, nurses and techs, but for this latest hospital visit, Child Life, which works to help children and teens cope with the challenges of hospitalization, illness and disability, has played a significant role in getting her through a long and difficult stay.
“Everyone is so caring,” Maddie explains. “They are like family to me.” Maddie and her friends received support and counseling on what to expect throughout her latest journey. This has been especially helpful to her friends—who are often afraid of what they see in hospitals and can disappear when a sick child needs them most. That didn’t happen here and Melanie credits and excellent and dedicated team that prepared everyone for what to expect and how to react in order to show support.
“Maddie has been blessed that her friends have stuck with her,” Melanie explains. “Child Life helped with the fear so much. Being in 11th grade is a vulnerable time. She has also had virtual teachers who have helped her keep up with classes over the computer.”
Maddie also has not taken for granted this new heart that has allowed her to live. “I don’t know who it came from, but I am so incredibly blessed to have another chance at life through another person.”