New children's book teaches families about hypertrophic cardiomyopathy
A new children’s book co-authored by cardiologist Srihari Naidu, MD, and former Miss Ohio Lindsay Davis has been released with the goal of educating children and their families about hypertrophic cardiomyopathy (HCM), an uncommon and complex heart condition. Titled Lindsay's Big Heart, the book helps kids and their parents understand the condition and the necessary tests involved in diagnosing it.
Naidu, director of the HCM National Center of Excellence at Westchester Medical Center, and Davis, a well-known advocate for HCM education, worked together to create a resource that simplifies the medical jargon and demystifies the disease for young patients. Davis, who was diagnosed with HCM at 17, has been an advocate for heart health, having inspired Ohio’s 2017 Lindsey’s Law, which raises awareness about sudden cardiac arrest and promotes training in CPR and AEDs for student-athletes.
"Patients have to be empowered and educated on why to come to the doctor and avail themselves with all these tests and treatments. I wanted a tool that can empower my patients to go talk to the rest of their family, including their kids and adolescents in a very simple way," Naidu explained.
Many children and teens with HCM are misdiagnosed because the symptoms often overlap with other conditions. This book is designed to quickly bridge the knowledge gap for both children and their families. Naidu said education is crucial because many people are unaware of the condition or its risks.
The book walks children through what to expect during diagnostic tests such as ECGs and echocardiograms using accessible language and illustrations. Davis said the book reflects on her own experience being diagnosed.
“Even as a teenager, I was scared and confused by the tests and didn’t know what was happening. This book aims to provide comfort and understanding for kids and their families,” Davis explained.
In addition to the story, the book includes a glossary of medical terms and tips for protecting children with HCM, making it a resource for both young patients and their caretakers.
Along with the children's book about HCM, "Lindsay's Big Heart," co-author and HCM patient Lindsey Davis said there is a toy line that goes with it, including a pink ICD that attaches to stuffed animals.
The authors have also introduced a line of accompanying toys, such as teddy bears with miniature medical devices ICDs, to help children familiarize themselves with the tools they may encounter during treatment.
Naidu believes that empowering families with knowledge about the condition will ultimately lead to better outcomes and help reduce the fear and uncertainty that often come with an HCM diagnosis.
With the rise in awareness about HCM, partly due to high-profile cases of athletes collapsing on the field, Davis said this book is a timely resource aimed at making heart health education more approachable for children and their families.
"I become a better patient with learning about my disease, what the tests mean, how I can better help my doctor, and learning how to converse with my doctor by being an informed and educated patient. So with this book, I not only hope to bring comfort to children and families, but to be able to understand what it means to have the heart condition and what those tests do for your heart," Davis explained.
Dave Fornell has covered healthcare for more than 17 years, with a focus in cardiology and radiology. Fornell is a 5-time winner of a Jesse H. Neal Award, the most prestigious editorial honors in the field of specialized journalism. The wins included best technical content, best use of social media and best COVID-19 coverage. Fornell was also a three-time Neal finalist for best range of work by a single author. He produces more than 100 editorial videos each year, most of them interviews with key opinion leaders in medicine. He also writes technical articles, covers key trends, conducts video hospital site visits, and is very involved with social media. E-mail: dfornell@innovatehealthcare.com