This Saturday I will be walking with Team Toby at the Puget Sound Heart and Stroke Walk. Thousands will gather rain or shine and take a three mile trek around Seattle to raise awareness for Heart Disease. I think everyone knows someone affected by heart disease but it wasn’t until March of 2013 that my eyes were opened to an entirely different world.
I received a phone call from my sister that fateful March day. Her unborn son had just been diagnosed with Hypoplastic Left Heart Syndrome. I had no idea what that was or what it would mean for him but I knew it didn’t sound good. I went to work learning what I could while packing up my things in preparation to move back home and help her out.
Prior to Toby, my understanding of the human heart was limited to almost nothing I could remember from my high school health class. I quickly learned heart defects were more common than most of us probably realize. Nearly one child in every one-hundred is born with some kind of heart defect. Fortunately most aren’t life threatening and many don’t require any intervention. Unfortunately some go undiagnosed and by the time they are discovered, the damage is done. How many of us have heard stories of the high school football or soccer player falling on the field, never to get up again? In most cases, CHD or a congenital heart defect is to blame.
Thankfully in the case of my sister and Toby, he was diagnosed in time for palliative measures. HLHS is a condition in which the left side of the heart is severely underdeveloped. In effect, Toby was born with only half of a heart. He had his first open heart surgery when he was five days old. His heart was stopped, he was placed on bypass, and a surgeon delicately began to manipulate the defective organ in such a way to keep him alive. The procedure was called the Norwood and it was only the first in a three stage series of operations Toby would need.
Research continues to find the cause and cure for congenital heart defects but research needs money. People give money to the causes they care about and the causes that affect them most. CHD is a cause that affects so many yet doesn’t get the funding it needs. I walk to raise awareness for children like Toby who live with broken hearts. Will you walk with me?