I recently joined a Facebook group called “Tetralogy of Fallot” thinking that I would have the chance to connect with other adults with TOF and possibly talk to parents of children with TOF. What I saw kind of blew me away. Most of the group members, or at least the active group members are mothers of very young children with TOF, and generally pretty under informed about this defect. Many of these mothers ask questions about the positive “heart” affects of vitamins or supplements on their baby or ask about possible learning disabilities for their growing TOF children… All I can think is, “Really? There aren’t any magic pills that are going to cure TOF!” I guess on one hand, I can understand that they want to be as informed as possible on the defect (and any possible difficulties that come from it) and they can hope with all of their heart that their child is as healthy as they can be. As a patient myself, I can’t even begin to imagine all the things that ran through my own parents minds when I was diagnosed and through my three open heart surgeries and countless other procedures. All I know is what *I* went through.
But one of the things I noticed about this group is the enormous amounts of prayer requests. Now, I’ve mentioned before that I’m an Atheist. But just because I’m an Atheist doesn’t mean I’m heartless (emotionally speaking). I was talking to my Dad last week, letting him know about my upcoming catheter ablation procedure and Dad was pretty calm about it and true to his form, even offered me a bit of a joke. He mentioned that my grandma had been worried and suggested that I call her to let her know too. (Now, this isn’t to say I wasn’t going to call her also to let her know, but that did give me an extra push to not put the phone call off.) Then Dad said, “You know, your grandmother told me that if you weren’t an Atheist, she’d pray for you[r health].” That actually made me chuckle a bit. I mean, I get it. I understand that a lot of people in the world believe in God and even in the power of prayer. It’s not something I believe in, but who am I to say she can’t send out a little prayer for my good health, or for a successful procedure? If it would make her feel more comforted, then by all means, go ahead. It actually warms my heart that she loves me enough to want to pray for my health, since that’s something she believes in.
So that takes me back to this group and their insane amount of prayer requests. Prayer requests for things such as a working heart valve that will never need to be operated on, no need for a pacemaker later in life, no infections, no complications, etc. Some of these things are just unavoidable. There is a (very) good chance that the heart valve in question will start to leak and will need to be replaced as the child grows up. It’s just a fact of life for patients with TOF. Depending on the severity of the defect (because everyone is different), it’s possible that her child will need a pacemaker or even a defibrillator at some point in the future. I never thought I would be faced with needing a defibrillator. My heart has always been healthy enough for me to run and play as a child, and exercise as an adult. But right now, there is a 10-20% chance that I’ll need a defibrillator implanted to control my SVTs (Supra Ventricular Tachycardia). These are just facts of the condition that those of us born with this defect will have to deal with as we age.
I’m not saying to stop praying if you believe in it, but I am offering a more realistic approach that you can take as a parent. Be strong. You’re their parent, there will be times when your child will be scared. Hell, even as an adult, they’ll be scared shitless. It’s just a fact. I know you’re scared too, but be emotionally and mentally strong when they can’t be. Educate them to about their defect. There will come a time when they’ll go to their doctors appointments without you and will need to understand their history and will need to understand the terms that the doctors are using. Teach them to understand their body and to know their limitations (as prescribed by a doctor, of course). They will always know they’re different than other kids, and forcing them to sit on the sidelines (so to speak) because their body can’t do as much will only widen the gap between them and other kids. And lastly, be positive. Positivity goes a very long way. Hell, I’m 31 years old and I still pull on my parent’s positivity and strength when things start getting rough.