Children's Cardiomyopathy Awareness Month

I just found out that September is Children's Cardiomyopathy Awareness Month! Talk about joining the cause a bit late, but well...oops....

Cardiomyopathy is a disease of the heart muscle, and it is what Kai was diagnosed with at the age of 18 months. He has been living a normal life despite this though, and I remain focused on that, but it is scary to me! 


The Children's Cardiomyopathy Foundation says this:

With the pediatric population, cardiomyopathy occurs in approximately 12 children out of every million with about 1,000-5,000 new cases diagnosed each year. The majority of diagnosed children are infants under the age of 12 months with fewer cases between the ages of 1 to 12 years. When cardiomyopathy is diagnosed in children before puberty, it is considered extremely unusual and it may not have the same causes, manifestations or disease progression as cardiomyopathy in adults.

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. 

Kai was diagnosed after the pediatrician noticed that he wasn't gaining weight after 9 months old. It took us months and months of numerous tests (many that we felt were unnecessary as he would only have one symptom from the list of many items the doctor wanted to look into) and visits to the dietician, but it was a random x-ray that showed us the real problem and brought us to the Children's Hospital's Cardiology department. To say that I was scared would be an understatement!  I still remember when the nurse gave me pamphlets on Congestive Heart Failure soon after we started to see the cardiologist! I'm sure it was very important for me to know the signs and what to look for, but wow, what bad timing! We were given the impression by the doctors that Kai was in good hands and doing well and that he would be "just fine" with this! Pamphlets on your son's heart dying is a very scary thing to read right off the bat! If I could change one thing, it would be that. The nurses could still hand out the information, but I think they would have a good chat with you first on your child's condition and the doctor's prognosis first.

This is Dilated Cardiomyopathy: The heart muscle gets thin and the left ventricle becomes enlarged so the heart muscle is unable to squeeze properly, causing the amount of blood that is pumped into the body to be reduced.

So far, Kai has been hospitalized while they did a 24 hour Holter on him and got a medication sorted out for him (at age 2), and he has had a myocardial biopsy and heart catheterization done (which really freaked me out as well!) to determine the cause (at age 7). That came up with nothing though, so he is diagnosed as Idiopathic, although it is thought to be from Myocarditis, which is an inflation of the heart from a virus (not that I remember him being really sick as an infant)

Each year, he returns to BC Children's Hospital for an Echocardiogram and EKG testing and for a follow up visit with his cardiologist. And each year, I remind myself that he has been doing well all year and has no concerning symptoms, so there is no reason to worry about a change in his heart condition. And so far I have been proven correct and relieved.

When we first arrived at BCCH, in 2005, we were told that it wasn't very common for children as young as Kai to be diagnosed with Dilated Cardiomyopathy. It was something that older men get. And because of that, there wasn't much information out there on it. The cardiologist was working with many other doctors in other hospitals to learn more, but there wasn't the statistics to go on, or the history, which was neat, but also unnerving. It says on the Children's Cardiomypoathy site that, "Cardiomyopathy in children may also present differently from diagnosed teenagers or adult. It is considered unusual when an infant or a child is diagnosed with symptoms at such a young age. Typically, symptoms are not apparent until the late teens or adult years when most patients are diagnosed." 

I don't know what the future holds for Kai. But I need to remind myself that I don't know what my health future is like either! We were told to not hold him back though, to let him run and play football! So, for now, I am trusting in his wonderful doctor and trusting that God has a better plan for Kai's life.

For more information on Cardiomyopathy check out the Children's Cardiomypathy Foundation.  
Also, check out for more detailed information on Dilated Cardiomyopathy HERE.