Early Childhood Experiences with Heart Failure

Like any child who grew up in the 1970s, staying out until the street lights turn on, riding tricycles or bicycles, taking walks, and going to school was a common theme for a SW Pennsylvanian child. However, my congenital heart disease had a profound impact on my early childhood life during those years.

Although I had a cardiac catheterization at 4 months old and a Blalock-Taussig Thomas Shunt directly afterwards, the pediatric cardiologists really did not have a life expectancy range because they did not have much to go by statistically speaking. So each year they explained to my young parents that they had no idea how long I would live.

My early childhood experiences were impacted by my heart failure

By a year and a half, my parents became concerned because I was not taking steps towards walking, let alone trying to lift myself up to walk. My mother would say that I used my hands as legs and scooted my bottom across the floor to get a toy across the room.

By that time, I had a sister and she was developmentally surpassing me. And then, we were both walking at the same time. My sister would carry the toys when we played outside because all I could manage was just to walk from point A to point B. For her, it was almost an innate sense to bring me things such as toys, books, or pillows. And because of my heart failure, we never fought with each other at this time.

Along with that, if my parents went anywhere, my father would carry me and my mother would carry my sister mainly because I became extremely tired easily and I could not keep up walking alongside my parents.

At the same time, my parents noticed that my lips were still a purplish tint and I had clubbing in my fingernails, as well as my toenails, that did not go away after surgery at 4 months old. By the age 4 years old, my parents realized that I would probably never be athletic and be a frequent patient of the Children’s Hospital.

My parents were my advocates and taught me to advocate for myself

Around kindergarten, the pediatric cardiologists explained to my parents that I would need another experimental open heart surgery called the Fontan, but they had not done this medical procedure at the Children’s Hospital yet.

My parents once again requested more time and expressed their concerns because I would have been the first patient to have this surgery. The pediatric cardiologist stated that more time would be allowed for now, but they would prefer to complete the surgery when I hit the age of puberty because that was the norm for most of the other Children’s Hospitals who already completed Fontan procedure on their patients.

Even at an early age, my parents started expressing the importance of speaking up for myself and telling the pediatric cardiologist how I felt- whether it be tired, lack of appetite, lack of energy or sleep, sad or happy, or even what part of my body hurt.

They also drilled my congenital heart diagnosis so I would be able to remember it in case they were not with me. By the age of 4, I knew the words pediatric cardiologist and why I had to go to the Children’s Hospital to see the pediatric cardiac team.

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