A Normal Kid with HLHS
CKF Ambassador Josh Gerrits’ Transplant Journey
Meet Josh. His journey to a heart transplant began just two days after he was born when he was diagnosed with Hypoplastic Left Heart Syndrome, commonly known as HLHS. Throughout his life, he has worked hard to overcome the challenges posed by his diagnosis. Currently, he is a student at the University of Wisconsin-Madison, studying nursing and information science.
HLHS is a condition where the left side of the heart does not fully form, preventing it from functioning properly. As a result, the right side of the heart has to work overtime to keep the body functioning. This condition has necessitated numerous surgeries for Josh, with the first three occurring when he was just six days old. The recovery from these surgeries was anything but straightforward. Josh spent an additional seven weeks in the hospital and required a G-tube for feeding. When he was eventually discharged, he needed constant oxygen and several types of therapy, including physical, occupational, and speech therapy. His speech was so affected that he was nearly left unable to speak. Thanks to surgery and dedicated speech therapy, he was able to overcome this as well.
Just before Kindergarten, Josh underwent valve repair surgery. Combined with ongoing therapies, this allowed him to start school. The UW Health American Family Children's Hospital team regularly monitored his heart to ensure he remained stable. Meanwhile, Josh was determined to lead as normal a life as possible, participating in sports like football, soccer, basketball, T-ball, and baseball. However, this was not without its challenges; he often struggled with endurance and needed to take breaks more frequently than his peers. But to Josh, this was a normal part of his life. He believed he was just like the other kids—he simply had HLHS and made the most of every day growing up.
It wasn’t until high school that his situation changed. Doctors noticed that his liver was not functioning well and that it was negatively affecting his heart. Just before his sophomore year, he was placed on the transplant waitlist for a heart. He was at school when he received "The Call"; he clearly remembers being called to the office and seeing his mum had come to pick him up. His mum told him in the car that he was going to get his transplant. They stopped by their house, and Josh stuffed a bag with as many clothes as he could fit, and they were off to the hospital.
After all the tests and procedures were complete, Josh and his family were told the transplant was a go! Three days later, Josh woke up at the hospital and spent another 12 days there recovering before being sent home just before Halloween. discharged just before Halloween. Josh spent three months away from school, but his teachers supported him sending all of his assignments. He focused on keeping up with his friends so he could graduate alongside them. His dedication paid off, and in the year of COVID-19, 2020, Josh graduated from high school and quickly enrolled at Madison Area Technical College.
Due to COVID, much of Josh's first year was online, but he was able to finish in person in the fall of 2023 and graduate with his Associate's Degree in Math, Science, and Technology. In the spring of 2024, he began his studies at UW, working toward graduation next fall with the goal of becoming a Nurse Practitioner specializing in cardiology, inspired by his own experiences. Josh is eager to help others and provide them with the support and inspiration he received during his journey.
