When Brayden was born, he was premature and was having a hard time gaining weight. His family took him to weekly weight checks with little to no change taking place. After a change of pediatricians, they were told he had a heart murmur. Brayden and his family were referred to Nemours Children’s Hospital, Delaware for further evaluation with the cardiac team. Brayden was diagnosed with dilated cardiomyopathy, requiring the initiation of medication to observe his response. With additional testing, the diagnosis of Barth Syndrome was confirmed. Barth Syndrome is a rare condition that causes an enlarged and weakened heart, weakness in muscles, frequent infections, and more.
Due to his inability to gain weight, a G-tube, otherwise known as a Mickey button, was placed to provide extra calories and nutrition to Brayden which overnight feeds. Brayden received yearly cardiac catheterizations to monitor the function of his heart. In December 2014, when Brayden was four years old, he became very sick and was airlifted to Nemours Children’s. This led to an almost six-month stay at the hospital while he waited for a heart transplant. In April 2015, Dr. Christian Pizarro, Chief of Cardiothoracic Surgery, performed the heart transplant. Since then, he has had several heart biopsies and heart catheterizations.
Brayden’s mom says, “During our stay at Nemours, Brayden received top-notch care from the whole team. While we were inpatient, he received multiple services including, occupational therapy, music therapy, physical therapy, speech therapy, and child life visits. In addition to staff, Brayden was blessed to receive daily visits from volunteers who brought special gifts. It was shown each day that Brayden was not just a number, and each caregiver provided their best care. We were able to make a schedule so that each day he had therapies at the same times, and we made it seem as normal of a routine as possible for him, just in a different setting outside of home. The caregivers tried to make it the best experience possible despite the circumstances.”
Since his transplant, Brayden has returned to school, and his family strives to make his life like that of any other 14-year-old boy. They visit the Nemours Children’s Cardiac Center quarterly to check up on the precious gift that he was given, his heart. They stay in close contact with his care team to ensure that his heart is healthy for many more years to come!
Dr. Christian Pizzaro says:
“Family-centered care made life more manageable and routine, as close to normal as possible while waiting for a new heart. It’s a great day for everyone who participated in his care to see Brayden enjoy a life with no limitations.
