What a Mug

I have mulled over this post for quite some time now. I’ve vacillated on what to say, how to say it, and whether it should be said at all. And to be honest, I’m not sure I’ve come to any conclusions other than I have to go with it. I should have a record of my feelings here and now. Because here at the Winters’ home, we’re officially heart sick.

About a year and a half ago, in June of 2009, I took my kids in for their well-child check-ups. At the time, their pediatrician noticed they both had heart murmurs. They didn’t seem overly concerned, and we got lost in other conversations, and the topic was dropped. Then, a few weeks later I had to take Mylie back in for another reason. At that time, the doctor mentioned again about her murmur and thought we should get it checked out. I reminded him that at our last appointment, he had been a little more concerned about Nolan’s murmur, so he gave it another listen and requested for me to take them both to a cardiologist, just to have it checked out.

About a month later I took both kids in for Echocardiograms (ECHOs). While Mylie’s murmur was benign, they were concerned about a thickening in Nolan’s heart, and wanted us to come back for a follow-up in about 8 months. The cardiologist seemed pretty relaxed, so I thought it was a fairly insignificant diagnosis.

Fast forward 8 months to March of 2010. We take Nolan back in for another ECHO, and meet with the doctor. He tells us that his initial assumptions had been confirmed and that  Nolan has Hypertrophic Obstructive Cardiomyopathy (HOCM). He explains that a part of his heart muscle, in between the ventricles, has become overly thickened, and is somewhat obstructing the bloodflow between the two chambers, therefore causing the heart murmur. And then he asks if I have any questions.

Questions? I don’t know. I don’t even know what you’re talking about. I’ve never heard of this disease before. What questions am I supposed to have? I mean, the only thing that comes to mind is, is it serious?

It turns out it is indeed very serious.

Hypertrophic Cardiomyopathy is one of about 4 types of Cardiomyopathy. It is the leading cause of sudden death among athletes.  Pediatric Cardiomyopathy occurs in about 12 children out of every million, and unlike other congenital heart conditions, there is no surgical treatment or cure that can repair the damaged heart or the stop the progression of the disease.

There is a vast amount of literature on adult cardiomyopathy but not all of the information is relevant to children diagnosed with the disease. Unfortunately, there has been little research and focus on pediatric cardiomyopathy over the years. Consequently, the causes are not well understood. According to the Pediatric Cardiomyopathy Registry, less than 25% of all patients have an identified cause despite rigorous, standardized evaluation. What is known is that the underlying causes of cardiomyopathy in infants and children may be considerably different from that diagnosed in adolescents and adults with similar symptoms. Pediatric cardiomyopathy is more likely to be due to genetic factors while lifestyle or environmental factors play a greater role in adult cardiomyopathy (Children’s Cardiomyopathy Foundation).

A diagnosis at a young age usually, but not always, signifies a serious heart condition that requires aggressive treatment. The concern lies in the uncertainty of how the heart muscle will respond with each additional growth spurt. With some older children, the condition may stabilize over time with the aid of certain medications or surgery. In severe cases, small children may experience progressive symptoms quickly leading to heart failure. This presentation contrasts with most diagnosed adults who may only have minor symptoms without serious limitations or major problems for years (Children’s Cardiomyopathy Foundation).

Luckily, for us, Nolan appears to be very asymptomatic. He does tend to tire more easily than his peers, though not significantly. When he gets worked up or gets sick, he develops a very palpable and very rapid heart beat. And our biggest blessing is that at least we know. So many kids who have this disease do not know about it until it’s too late.

So, I suppose that the reason this post has made it’s way to the blog at this time, is after 18 months, it’s finally sunk in that this is real, and it is not going away. We have recently been in for our 3rd ECHO, and there’s been no change. He still has too much heart, and that’s just not a good thing. Luckily, it hasn’t progressed, but the doctor has decided that it’s severe enough to put him on a medication. The medication (a Beta Blocker) won’t cure anything, but will hopefully manage is heart rate, and slow it down, so that it doesn’t overwork itself. The biggest threat to his life is electrical malfunction.

So with this last visit to the cardiologist, along with the prescription for life-long medication, I’ve finally started the grieving processes. I am grieving for the losses he has no idea are in store for him. Life as we know it has changed. He won’t be able to play competitive sports. He won’t be able to fully participate in gym class, and probably won’t be able to keep up with his peers. He may have to carry around an external defibrillator. There is a high likelihood that at some point in his life he will have to have heart surgery (either a myectomy, or an internal defibrillator or – worst case – a heart transplant). I’m grieving that he’ll be on medication for the rest of his life (and he’s only three). And I’m grieving the loss of my perfectly healthy wonderful little boy.

But on the other hand, I’m celebrating. How lucky we are to have found out now, before it’s too late. How lucky that he is young enough that I can steer him in artistic pursuits, and toward golf, and bowling. How wonderful that he won’t have to “give up” his favorite sport. How lucky that we have the medical technology for the types of surgeries he may need, and for the genetic testing to know if the rest of us are at risk. And how lucky we are for our faith in the gospel of Jesus Christ that we can know that he is being cared for by the perfect physician – and one who loves this little boy even more than I do. And in the meantime, I get to love him with everything I’ve got. Because I ♥ This Guy. And THAT is the best blessing.