Acute Systolic Dilated Cardiomyopathy, Heart Transplant Rylann Day
Eleven-year-old Rylann Day was starting her fifth grade year at school when she was diagnosed with an enlarged heart and placed on the heart transplant list in August 2018.
“She was an active, normal child like any other fifth-grader until the week after school started and she got sick,” said Jessica Day, Rylann’s mother. Rylann first realized something was wrong when she became short of breath walking a short distance with a friend. Her parents took her to her local doctor, who diagnosed her with fluid in the lungs. The doctor also discovered an abnormal heart murmur, a gallop heart rhythm, leg swelling and extended veins in her neck. Children’s of Alabama was contacted for consultation, and it was recommended that Rylann be transported to Children’s for further evaluation.
At Children’s, Rylann was diagnosed with acute systolic dilated cardiomyopathy – an enlarged heart condition that prevents blood from being pumped through the heart effectively. As a result, fluid had built up in her lungs causing shortness of breath. Rylann was placed on the heart transplant list.
“I was numb,” recalls Jessica. “You take a perfectly normal 10-year-old, and all of sudden, you are now going to have this done? It was devastating.”
While Rylann waited for a new heart, the medical staff at Children’s was proactive in helping the family prepare for surgery. “They were so helpful in training us for what was about to happen – what to do, what symptoms to look for, when to come back to hospital, etc.,” Jessica said. “They also helped Rylann understand what was going on because she was scared. They helped her by reading age-appropriate books about the surgery.”
On January 6, 2019, Rylann received her new heart without complications. Following the surgery, the family underwent post-operation training to care for Rylann. “Everyone on the transplant team was so great,” Jessica said. “Rylann had such a wonderful relationship with Dr. [Waldemar F.] Carlo that I can’t describe. We had a really good experience.”
Today, Rylann is back to doing the activities she loves (bike riding and swimming), but at a slower pace while she builds her endurance. She travels monthly to Birmingham for her continued checkups.
Rylann was homeschooled while in the hospital and returned to her local school in April 2019. “Our school and church community have been very supportive of her and us through the entire process,” Jessica said. “It was a very shocking year for us, and although Rylann is anxious and uncertain about starting middle school, we believe fear is a liar.”