It struck a chord with me because I remember all too well being under the assumption that once Mira had surgery, she would be fine. Although I was disabused of that belief quite quickly and was under no such illusions when Patrick was diagnosed, I wish I had known beforehand. I wish I had been prepared for the fact that she will need ongoing care, medications, echocardiograms, heart catheterizations, antibiotics before going to the dentist, and myriad other things for the rest of her life. I understood from the surgeon that they were going to "fix" her heart by patching the hole. Simple enough. Patch the hole, and we're done. She's cured. Ha! If only.
Over time, as I've talked and shared with other people, I've noticed that they carry the same misconceptions I did, and it made me wonder why that might be. I can't speak for others, but for me, I discovered that it was the name. CHD stands for congenital heart defect or congenital heart disease. The problem is that neither "defect" nor "disease" adequately conveys all aspects of the condition. Both are loaded words with subconscious connotations that create misunderstandings.
Calling it a disease is problematic because diseases are often acquired or contagious. Thus, parents who already feel guilty and wonder what they may have done to "cause" it during pregnancy continue to beat themselves up about it, even though doctors, nurses, and other medical professionals work hard to convince us otherwise. In addition, because there are some heart problems can be caused by infections, some people incorrectly fear that CHD is contagious. However, those conditions are not CHDs--they are acquired heart diseases, occurring after birth.
Defect is a reasonable term because it adequately describes that there is an abnormality (or two, or four, or however many) in the heart. However, we generally think of defective things as being fixable or replaceable. And, it's true. Surgery can "fix" the defect. Surgeons can patch holes, reroute blood flow, add in missing parts, and do all kinds of amazing things. Indeed, since this last surgery, Patrick's heart currently functions very similarly to everyone else's. But, he is not fixed, let alone cured.
The truth is, these are chronic conditions. Even if you are a one-and-done surgery patient (as Mira currently is), it is a lifelong struggle. And for kids like Patrick, who will never be done having surgery, (at least until medicine finally finds a cure, or at least growing replacement parts), it's frustrating to encounter people who don't understand why he isn't "better." And while I'm at it, we need to do a better job of informing people that a transplant is also not a cure. Don't get me wrong. Transplants are amazing. They provide life and time, and if my kids ever need one, I will fight for them to get it because it beats the alternative. But, even putting aside all of the medications and risk of rejection and infection and what not attendant with a transplant, the anti-rejection drugs generally destroy the organs fairly quickly. You can get 10 years out of a heart if you are lucky; and lungs about five.
This is not to say that it's hopeless. The things they can do today to treat children and adults living with CHD are wonderful. Indeed, the fact that there are so many adults with CHD is a testament to the treatments and how well they work. But who wouldn't rather have a cure? And the only way to get there is more funding, more research, and educating the public that the treatments we have now, while good, are NOT a cure.
So this is me. Stepping out of my comfort zone to advocate. Doing my best to overcome my shyness and introverted tendencies to connect with people; talk with them; educate them; and inspire them. And this website is my beginning.
Welcome to Fixing Patrick's Heart.
