Thank you…Thank you for always making me laugh, like the knee-slapping, snorting kind of laugh. Thank you, it makes my heart so happy.
When I tuned into your show the other night expecting a good laugh, what I got instead was a good cry. Jimmy, I think I literally watched your monologue 50 times and cried for hours. I guess I needed a good cry rather than a good laugh that evening. Your speech meant so much to me (I am tearing up again just thinking about it).
I do not have a child with CHD, but I am in my 20s and have been conquering CHD my entire life. You see, I was just like Billy as a baby, and my parents were probably really similar to you and Molly. They had no idea the events that were about to take place when they set out to St. Joseph’s Hospital in Orange County to have their baby on October 31st. After a fairly easy delivery, I came screaming into the world… blue. Since it was Halloween and the staff were dressed as clowns and wizards, my mom probably wasn’t in total shock that I was blue…
When I’ve talked to my parents about my birth, my dad explained the situation as “very different” from my older sister’s birth two years prior. Instead of being cuddled by my mom, post birth, I was immediately taken away from her and rushed off to another room where they performed tests and realized my heart wasn’t working properly. I was born with something called Transposition of the Greater Arteries. I’m not a doctor, so I am not going to attempt to explain properly. But simply put, the two main arteries of my heart were transposed, as well as my left and right ventricles.
As you now know, this type of news is very alarming for new parents. As my dad was sitting there in shock, with my mom still isolated in another room, the doctors came in to share additional news with him. They had never successfully performed the surgery to correct my specific heart defect at their hospital. The only hospital who had a fairly decent track record (not perfect, but good) was Boston Children’s Hospital. I’m sure that to him, Boston Children’s seemed oceans away from the Orange County, California hospital he was currently sitting in.
But like you said in your monologue, you’re not going to let your kid die if you can help them. It’s just not an option! So a few days later I was on a private jet headed to Boston. Here is a photo of me during the transport.
I became the 100th baby at Boston Children’s Hospital to have the “switch” surgery. Here is a picture of me today.
I’m getting married in October, I played sports throughout childhood, I have a master’s degree from University of Southern California, I have traveled the world, and you better believe I conquered CHD! But it still isn’t fixed…
Here is a picture of me three years ago post open-heart surgery, which lasted 8 hours.
Here is a picture of me with my older sister at Machu Picchu exactly 3 months post open-heart surgery.
So yeah, I’m living and living well with congenital heart disease, but it is never fixed.
Here is a picture of me a month and a half ago with my mom. I had just gotten out of a 7 hour heart procedure. They made some corrections again, but it still needs work.
It used to be my parents burden, but I now carry the heavy burden too. My family and I were lucky to not endure financial struggles, but the emotional heartache continues to be very present. I don’t know what my future holds. There is no good data on long term outcomes for people who have had my surgery. The oldest person is only a few years older than me. Living with congenital heart disease is scary, it’s not for the weak. I already know Billy is going to grow up to be one brave, amazing young man. I thought it would be helpful for you to see some of these photos. I don’t want to be discouraging, instead I want you to know that CHD is not going to hold Billy back at all, but that it is still a lifelong disease. It is never fixed.
In order to raise awareness about CHD and inspire happiness, I started a 501(c)(3) nonprofit organization called Project Happy Hearts. Yes, we give back to all things CHD, but more importantly we encourage all individuals to go out and do what makes their heart happy. I live by the motto… life is short, live it with a happy heart. My hope is to spread awareness and help all people (not just those of us in the CHD community) live a happy, heart-healthy life.
I can’t wait for the day when Billy gets to share his story too. I know it’s going to be a good one since he already has an incredible chapter one. As hard as it can be, I’m also so very thankful for my story. I wouldn’t want it any other way. I hope Billy will feel the same.
Enjoy every moment with your new baby and again, thanks for always making me laugh. You make my heart happy.