What does being 1 in 110 mean? It means I am part of the statistic of the number of babies born with a congenital heart defect (CHD). February is CHD awareness month. There is so much attention put onto things like cancer, and not to downplay it in any regards, but we should also raise awareness to something so pertinent such as CHD.
Working in the NICU, I see them quite frequently. Babies born with CHD are actually some of my favorite patients to take care and have been majority of my primaries in the NICU. (Primaries are when a nurse takes care of a patient each time they go in for a shift, it helps with continuity of care.)
Heart defects can have a wide range of severity, some being repaired with a simple cardiac catheterization while others require open heart surgery. I was born with Total Anomalous Pulmonary Venus Return or what we say as TAPVR. In short, my pulmonary veins were connected to my right atrium not the left so my oxygenated blood was going in a circle between my heart and lungs and not to the rest of my body. Even with TAPVR there are three sub categories you can fall in. Supra, intra and infra. I had intra because my missed connection was within the heart not above or below. I have seen extremely sick and sad cases of TAPVR and while I was lucky with only having my one surgical repair (knock on wood), the effects of that have impacted me.
Growing up, especially as a female, my scars were always a topic of conversation. Heck, I still get questions about them whenever someone new sees me in a swimsuit. Being young I knew I had “heart surgery” but you don’t really understand what that means or the significance. If I couldn’t even understand it, imagine other kids. I was very self conscious when it came to my scars. Why did I have these when other kids didn’t. I felt weird or different I guess. My parents always made sure to remind me what these scars meant and that I was no different than any other kid, I was just unique in my own way. It took until I was in high school to even start wearing a bikini again to let my scars show. Over the years I have fully embraced what it means to have these scars and I know that they have made me strong. I will always probably be a little self conscious but what person doesn’t have insecurities.
These scars, growing up going to doctors appointments, echocardiograms, 12 lead EKG’s regularly, all impacted my decision to go into nursing. If I could help other heart kiddos and parents understand the significance of what it is like living with this, I would be doing something worthwhile in life.
I said previously that I tend to enjoy taking care of heart kiddos. I find that it has been comforting for parents especially seeing and talking to someone who has made it past the stage their baby is currently in. Although I personally cannot remember my time in the NICU, I have my parents stories to talk to parents about. I can recall what it was like growing up and what it is like now and that tends to give them hope. Let me be real though, not every heart kid is going to have a cookie cutter outcome like me. I had one uncomplicated surgery, I take no medications and I have been extremely active all of my life playing multiple sports growing up and now I find myself hiking as much as I can. Not all kids get this outcome. Many go through multiple surgeries, have activity restrictions and take daily medications.
I like to give heart moms who I truly connect with, this poem. I gave it to my own mom, and it made her cry. I’ve found that each mom I’ve given it to has resonated with its words.
These kids, no matter the outcome, no matter the severity, they are fighters. Heart kiddos are always scary for nurses because their status can change in dare I say, a heartbeat (sorry, had to.) Their anatomy is different, they have specific saturation ranges for the oxygen, some are one single ventricle precautions so as a nurse you better not let them cry. After surgeries they will be on sternal precautions so picking your child up to hold them isn’t easy.
Despite everything, being a heart kid & now adult, has made me who I am. Being part of the zipper club has been such an unexpected gift. My heart is something I always have to take special consideration to when it comes to things, but I wouldn’t change the life I’ve been given for anything.
Here are just some of my heart kiddos then & now.
To the past, present & future CHD kids, you are heart warriors.