Congenital Heart Disease and the Importance of Nutrition, Physical Activity and Preventive Cardiology

Seda Tierney, MD, FAAP

July 18, 2023

Kathryn Osteen, PhD, RN, CMSRN, CNE

July 18, 2023

 

Congenital heart disease (CHD) is the most common birth defect. With improved early detection, medical treatment, critical care, and the utilization of preventive cardiology care, most children with CHD are now surviving and thriving into adulthood.

In this article, Kathryn Osteen, PhD, RN, CMSRN, CNE, shares her personal journey within the health care system as a patient with CHD, and highlights the importance of a healthy lifestyle, including adequate screening, physical activity, nutrition, and childbearing considerations.

Story by Kathryn:

At 8 years old, while I was in a clinic appointment for an illness, the pediatrician stumbled upon a heart murmur, later diagnosed as a bicuspid aortic valve. I remember going to the hospital for tests (e.g., echocardiograms and EKGs), but not all the details. After my diagnosis, my doctor said to “listen” to my body to determine the level of physical activity I could sustain. I would know when an activity was intolerable. The doctor’s instructions included avoiding very strenuous exercise such as lifting weights.

My doctor permitted participation in soccer and gymnastics, insisting that I experience childhood and adolescence as normally as possible. As I grew into adolescence, I was cleared to start light jogging. I remember not being able to run as far or as fast as my friends. I sat out some races and other activities if I was tired or out of breath. I was just glad I could participate in some physical activity.

My pediatrician did not offer any nutritional instruction. My mother in turn read about heart-healthy diets and changed her cooking habits. I was always considered the “high risk” patient – taking prophylactic medication prior to every dental visit and going to the operating room to have my teeth pulled before getting braces. Surprisingly, conversations related to contraception or childbearing did not occur, even with the “high risk” designation. The only information I received from any physician was to have children while I was young if I wanted them.

In adulthood, I kept my doctor appointments, took preprocedural prophylactic medications, and oral contraceptives until deciding on childbearing. While I was pregnant with my third child, I experienced heart failure. Initially my doctor thought I had pulmonary hypertension too. Thankfully I did not, but I did need surgery to replace my aortic valve. With twin 5-year-olds and an 18-month-old, I had open heart surgery to repair a torn pulmonary valve, replace my bicuspid aortic valve, and repair an aortic aneurysm. After this surgical experience, I learned a lot more about my heart condition. Looking back, although I remember being told that I would need to see a cardiologist for the rest of my life, more teaching was needed on the importance of lifelong cardiac care.

“To this day, we do not promote physical activity or healthy nutrition in children with CHD adequately.”


Comment by Seda:

I am a pediatric cardiologist, subspecialized in imaging and aortopathy in children and adolescents. I see a good number of patients with congenital heart disease. Kathryn’s story is an amazing one; very educational, scary, and thankfully with a great ending. This story validates the importance of our imaging practice. When we perform screening echocardiograms in children with a heart murmur or an extra heart sound, we spend a lot of time making sure we see the morphology of the aortic valve well. Sometimes children move a lot during an echocardiogram, making the process challenging. However, it is of utmost importance. As in Kathryn’s case, if not followed properly, an abnormal aortic valve can result in severe complications later in life, especially during pregnancy. Remember this:

  • An untreated bicuspid aortic valve can eventually lead to symptoms of heart failure: shortness of breath, fatigue, and swelling.
  • An aortic aneurysm might develop downstream from the aortic valve and can lead to bleeding or rupture.
  • Lifting weights, which would increase blood pressure and heart rate, is normally avoided to minimize strain on the artery at risk for dilation.
  • Regular physical activity can improve vascular health of children with CHD.
  • The key is to outline a safe exercise routine to guide our patients and families.
  • Healthy diet counseling is essential to maintain vascular health given these patients may require future surgical procedures.
  • Early age-appropriate childbearing conversations need to occur.

Kathryn was told not to lift weights, which is common practice. Encouraging safe exercise and physical activity was very progressive during her childhood. To this day, we do not promote physical activity or healthy nutrition in children with CHD adequately. Most often, we tell our patients what not to do but do not focus on the importance of daily physical activity or healthy nutrition. Educating our patients about all aspects of self-care for a healthy heart should begin at an early age.

For more information about physical activity, healthy nutrition, contraception, and childbearing in CHD, please see the following links:

*The views expressed in this article are those of the author, and not necessarily those of the American Academy of Pediatrics.

About the Author

Seda Tierney, MD, FAAP

Seda Tierney, MD, FAAP, is currently a Professor at Stanford University, School of Medicine. She is a Pediatric Cardiologist and an Imager at Lucile Packard Children’s Hospital where she leads QI and Research efforts in the Imaging Laboratory. She is an NIH-funded clinician scientist with an expertise in vascular health and tele-health/exercise interventions in children with cardiac conditions.

Kathryn Osteen PhD, RN, CMSRN, CNE

Kathryn Osteen PhD, RN, CMSRN, CNE, is currently a Clinical Associate Professor at Baylor University Louise Herrington School of Nursing and serves in many roles for The Children’s Heart Foundation whose mission is to advance the diagnosis, treatment, and prevention of CHD by funding the most promising research. Previously, Dr. Osteen practiced critical care nursing at various hospitals and taught as a Medicine Nurse Educator at Parkland Health and Hospital System in Dallas, Texas.