A couple of weekends ago, our family attended the 3rd annual Heart Institute Family Education Day at Cincinnati Children’s. We heard amazing speakers as we focused on the long term outcomes of children born with congenital heart defects (CHD). Our keynote speaker was Jennifer Page.
Jennifer is mom to a little boy named Max who has a CHD. Max was in a Super Bowl commercial in 2011 as Mini Darth Vader. Her talk was a down to earth and an honest look at the realities of raising a child with a CHD. She challenged us to not raise victims and to do all we can to advocate for CHD and Cincinnati Children’s. We had fun learning more about healthy nutrition, long term CHD outcomes, and interacting with other families who have children with congenital heart disease. I was excited to hear several of the speakers echo the importance of families being connected with peer-to-peer support networks like Mended Little Hearts. Supported families and patients have better outcomes. I was also able to speak on the important issue of personal finance and CHD. I hope I was able to help some families learn about resources to ease the burden in paying ongoing medical expenses.
One of things I loved most about this year’s education day was that they provided educational and fun child programming. When I picked the kids up at the end of the day, Caleb was bursting at the seams to tell me all they had done. He got to tour the clinic, give a doll a doctor appointment, taste apples, and play! My kids were excited to spend the day with friends they know from Mended Little Hearts.
At bedtime Caleb continued the discussion, giving me insight to what he learned. Also it’s so entertaining to hear the train of thought of a four year old. Caleb asked me “Why did the doctor put the lines in my heart in the wrong spot?” I said, “Well Caleb when you were born the arteries or the tubes in your heart were in the wrong spot, the doctor put them in the right spot.” To this he asked, “How do museums put dinosaur bones in the right spot, they’ve never even seen dinosaurs?” I was a little amused by the thought process and but also impressed by the question. I’ll spare you my very unscientific explanation of how dinosaurs’ bones are put together.
But after I left the room for a minute to grab something, Caleb returned the conversation to the heart. “Mom, where did the blood in our body come from?” “We had blood in our body when we were born buddy,” I responded, “The blood is made of cells that divide, so our blood is always making new blood”. I was hoping that answer was actually accurate as I tried to remember back to my high school science classes. He continued, “And how does our heart move the blood?” I showed him with my hands and explained, the heart is squeezing like this. When it squeezes the blood is pushed out to your lungs for oxygen, then back to the heart, and then pushed out to all parts of our body all the way down to your tippy toes and back.” Caleb smiled, “The heart has a hard job to do!” I just hugged him, “You’re right buddy, the heart has an important job to do.”
Editor’s note: This blog post originally appeared on Leslie Sam’s blog, chdheartmom.com. Please give her a follow if you’d like to read more about her family’s journey with congenital heart disease. For more information about Mended Little Hearts of Cincinnati, visit their webpage.