The FULL OF HEART FROM THE START initiative is our pledge to help support all the little heart warriors and their parents by taking three actions:

 

#1 -  Simply being visible and vocal about what I went through as a baby and the facts around congenital heart defects (CHD). CHDs are America’s most common birth defect, affecting nearly 40,000 babies each year in the U.S. alone. This equates to 1 child every 15 minutes. CHDs are problems present at birth that affect the structure and function of the heart. Because of advancements made through research, death rates from CHDs in the U.S. have declined by 37.5% since 1999. ***Data retrieved from childrensheartfoundation.com

 

#2 - Represent the idea that, if you are in a dark place, know that it can get better.  My parents were told that if I did survive my first surgery as a baby, I would not live past the age of 11. Well…I’m an adult! I have a beautiful wife and an amazing boy, and have done so many thrilling things in my life so far. As technology continues to advance, our rate of survival increases. I had a 40-60 percent chance of surviving my first open-heart surgery in 1981. I had a 97 percent chance of surviving my second surgery in 2018.  There is hope - if you can find it.

 

#3 – Support research to advance the diagnosis, treatment, and prevention of CHDs through volunteering and fundraising. We are excited to walk in the Los Angeles Congenital Heart Walk this year to help raise money for The Children’s Heart Foundation, a foundation that funds research to advance the diagnosis, treatment, and prevention of congenital heart defects.

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I AM A HEART WARRIOR

 

I "B" was born with a condition known as Tetralogy of Fallot. I had my first open-heart surgery when I was just a baby and I always knew that I would eventually need a second surgery later in life. On November 5th, 2018, I had my second open-heart surgery. The 7-hour surgery was a success. I then headed to the ICU to begin my road to recovery. I spent nine days in the hospital and it was during those nine days that I seriously began to reflect. How had my parents survived this…watching their little baby go through such a major, traumatic surgery? I couldn’t imagine having my little boy go through what I had just gone through.

 

And then I started thinking about all the kids, I mean little babies - who have congenital heart defects (CHD), and their parents who are there by their sides. Once I left the hospital, I started doing research on the different ways in which we as a family could help. What I found was amazing.  

 

I found this inspiring, supportive community of heart warriors. Parents who support each other and brave kids who are unapologetically proud of their scars. A real community of support. I don’t think my parents had that. I don’t think I really ever mentally processed my first surgery as a child. Trauma of this magnitude at such an early stage of development can have serious and long-lasting effects on your life. And if you don’t have the resources or the community to effectively process what you went through, you can hold onto that trauma.

 

As a kid, I was always deeply ashamed of my scar. I always hid it. I hated gym class where we had to change in the locker room. I never went to the swimming pool. I always kept my shirt on. At times, I would even pretend I never had surgery and nothing was wrong with me. My parents were in and out of the hospital for the first three years of my life. They relocated hours from our home to the Ronald McDonald House in Detroit, MI and eventually had to trade time with me so they could continue to work to keep their health insurance. They sacrificed so much and deeply love and support me. During my childhood, I don’t think we as a family ever processed the trauma we all went through. To see a community where these kids and their parents are given the space and resources to process what they ALL went through is deeply inspiring.

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BE PROUD OF YOUR SCARS

 

To all the little heart warriors out there: Be proud of your scars and know that you are extremely special - for you have already moved mountains just to claim your spot here on Earth. To my parents and all the parents of these little warriors: I have no idea how you found and continue to find the strength to endure. You are truly an inspiration. And to the parents whose little babies fought the fight and did not survive: no words can express what you went through and continue to go through.