Updated: Oct 27, 2021
Did you know that it is Congenital Heart Disease Awareness week?
Did you know that 1 in 100 children is born with a congenital heart defect? That it is the most common congenital defect out there?
There are hundreds of different types of congenital heart disease….those ranging from a small hole that never needs repair (or repairs itself) to complex diseases that require multiple surgeries, potential transplant, or are too severe for survival.
My Henry has Tetrology of Fallot. I will never forget KNOWING something was wrong. While the ultrasound tech and my husband wondered why I kept asking about his heart, my mommy intuition just KNEW. Crazy, it sounds now.
The next week we were sitting in the office and we were told Henry has CHD. That he would need at least one open-heart surgery and would likely need more surgeries down the road. Our world changed. Our focus changed. Our priorities changed.
We cried. We held our oldest closer, knowing that he would need to protect his little brother even more so now.
Henry is two years old. His surgery was 22 months ago and feels like yesterday. He runs around and now he only turns blue a little bit if he cries too hard. Before surgery, I did not leave his side for more than 5 minutes. If he stopped breathing and I wasn’t there, I would never forgive myself. Every week he got more blue and more blue. The hope was to last for 4-6 months to grow and gain weight before surgery, but he declared himself ready at 2 months. We couldn’t wait any longer – I will NEVER forget handing him to the nurse and watching her take him to the OR, not knowing if he would return.
I remember learning about TOF in medical school. It was in pathophysiology my second year. I was told I probably wouldn’t see it unless it was an adult patient. I was told to make sure to understand the disease process because it would be on my boards – I never could have imagined 15 years later it would smack me square in the face.
We are the lucky ones. We are the parents with resources. We are 20 minutes away from a leading heart center with amazing cardiologists and surgeons. We are fortunate to have, at least for now, only handed Henry off once. We go in for 6 month checks and walk away with good news. Watch and wait…when he was in surgery, they were unable to save his pulmonary valve so he lives without one now. As adults, we would die. At some point he will need a valve. Will it be done in the cath lab by then? Amazingly enough, yes probably. No further open heart surgeries? Hopefully not. Again, how lucky are we? All the while knowing how quickly things can change. What is we go to a 6 month check up and something is wrong? He needs a stent? Again, it smacks you in the face.
The balance between doctor and mom is always in the back of my mind. To look at Henry, you would never know anything was wrong…until his shirt comes off. We call it his big shark bite or battle wound. He won’t remember. He will roll his eyes one day when he has to go to the cardiologist. GOOD. That means he is still here. That means he is living his life and his heart doesn’t define who he is. But at the same time, I want him to understand this heart world. This place that so many beautiful, amazing children are a part of. Henry’s heart is a deep part of who we are as a family. I respect that. I embrace that. I remember that everyday. We all have scars, some bigger than others. Henry’s makes him more beautiful and me more grateful. We laugh, we cry, we throw food, we rough house with our older brother. We love trains and Yetis and swinging. We play hockey in the front yard, knowing Henry won’t be allowed to do so in the future. We go for family jogs, to the beach and the pool. We have no fear…of jumping into the water or off a chair. We are a heart family. We support two local CHD organizations: CampLUCK and TheHEARTest Yard. Consider learning about how both of these organizations help our local heart children and what you can do to help.