Case narrative

Amanda is a bright, active 12-year-old, who has been experiencing some shortness of breath and taking naps after school, something she has never done even as a toddler. After fainting during a track and field meet, her physician ordered a number of tests and diagnosed Amanda with dilated cardiomyopathy. Amanda’s father died of a drug overdose before she was born. Amanda’s mother, Lynn, hoping to protect Amanda from knowledge of her father’s lifestyle, has told her that he died of a sudden heart attack. She is raising Amanda on her own, without family or community to support her.

At the time of Amanda’s diagnosis, her pediatric cardiologist advises Lynn that Amanda will likely need a heart transplant. He suggests that the pediatric cardiology fellow, advance practice nurse, and child life specialist meet with Amanda and her mother to explain Amanda’s condition, the medication she will have to take, and the likely need for surgery, in a developmentally appropriate way.