For those with CHD falling out of care is a very common problem, which can lead to critical emergency situations. A whopping 61% of children with CHD will stop seeing their cardiologist by the time they are 18, and just 10% of adults with CHD are getting the appropriate cardiac care. In this week’s blog, nurse and an adult with CHD, Roslyn Rivera discusses the importance of teaching your children to manage their own care as early as possible.
Think about teaching your child to spell their name. It seems like the next simple step after learning their
ABC’s. How old was your child when you started teaching them to spell their name? Maybe age four?
Imagine if at that time, you also begin to teach your child about their heart diagnosis. Your child can understand the concept of their heart, that their heart is different. When toddlers are learning about the world around them and asking all those “why” questions, it is the best time to start answering some of the questions they may not know to ask. “Mom, why do I have this scar of my chest?” “Dad, why do I have to take that medicine everyday?”
In today’s world, over 85% of children with CHD are living into adulthood. In fact, there are more adults living with CHD than children. Yet over 50% of those adults are not in proper cardiac healthcare. As the parent of a child with CHD, you have a lifetime of learning all about your child’s heart; as you learn, you can teach.
As a fetal and pediatric nurse, I often explain to parents that the world of “congenital heart disease” is like learning a new language. When you are introduced to the CHD world, you will begin to hear several foreign words: “hypoplastic” “catheterization” “ventricular” “tetralogy” … Just like learning a new language, the more you practice, the easier it becomes. I grew up in a house where my grandparents spoke Spanish, but my parents didn’t teach me. Looking back, I wish they had. Instead, they taught me about my own heart condition. They encouraged me to take responsibility of my daily medications when I was ten years old. I wore a Medic Alert bracelet that had my diagnosis on it. They taught me the importance of taking care of my health so that when I moved 400 miles away from home for college, I was prepared.
So as you teach your child how to read and write, I encourage you to include their cardiac diagnosis and medications on that spelling list. Because soon your toddler will be entering high school. Soon they will be driving, and at an amusement park with their friends. What if they have a health emergency when they aren’t with you? Will your teenage child be able to tell the emergency medical team what their diagnosis is? What their medications are?
Transitioning from pediatric to adult congenital cardiac care isn’t just about choosing a different doctor. The reality is that it is about your child themselves growing up and taking ownership of their health. Just as you are teaching them to tie their shoes, to safely cross the street, to drive… it is equally as important to teach them about their heart. I believe that it is never too young to educate your child about their health. I also believe that my parents did that exactly, and their early education led me towards a career in healthcare. Having worked in 7 different countries as a nurse, I feel confident in the statement that parents everywhere want their children to grow up healthy and happy.
Instilling the knowledge of their heart condition at a young age will shape the building blocks of their life. It is estimated that 28% of children with a CHD will stop seeing a cardiologist by the time they are 6 years old, increasing to 61% by age 18 years, despite the need for lifelong care. Therefore, it is important to start the “transition” process sooner that the age of 18. You can teach your child that their congenital heart health is vital. Don’t be a lost-to-care statistic.
Roslyn Rivera, RN BSN CPN-BC is a Fetal and Pediatric Cardiology Outpatient Nurse Coordinator at the UCLA Children’s Heart Center, Mattel Children’s Hospital. Roslyn was born with partial AV canal and had two open heart surgeries as a child. Her heart defect led her to become a pediatric cardiac nurse. Through her career, she has traveled all over the world to provide pediatric cardiac care and education in developing countries. Roslyn’s father was diagnosed with CHD at the age of 57, and unfortunately passed away from complications related to his CHD surgery. Roslyn enjoys teaching patients and families about their heart condition and helping children and young adults learn to take ownership of their health; often utilizing her personal experience to relate.
Roslyn also volunteers with Camp Del Corazon, a nonprofit that provides year-round opportunities for children and young adults with heart disease; with the Adult Congenital Heart Association as a Heart to Heart Peer Mentor; and with Hearts Unite the Globe as a Medical Advisory Board member.
When Roslyn is not working or volunteering, she enjoys camping and hiking with her husband (who is a heart transplant recipient) and their two dogs.