Dilated Cardiomyopathy

Skyler is a happy, energetic seven year old with a heart condition called Dilated cardiomyopathy. When she was diagnosed at six months old her prognosis was poor. With a five year survival rate of only 40-50%, my husband and I were scared that Skyler would not survive. Now, seven years later, we are thrilled at how wonderfully she has responded to treatment and we are grateful for all the things she has taught us. She is currently maintained on Coreg and Cozaar and has a pacemaker to coordinate the pumping action of both ventricles.

On May 22, 2008 Sky will have surgery to replace her biventricular pacemaker. This will be her third surgery in four years and I thought this would be a good place to post updates. Sky is pretty excited about her upcoming procedure. She has got to be the bravest little girl I know. When I talk to her about her surgery she says, "I love my doctor, can I have it today?". I can't imagine an adult saying such a thing, no matter how nice the doctor.

I guess I should list some boring facts about DCM. I don't really pay much attention to them but I know others are curious. The thing is, we don't treat Skyler like she has a heart condition. We treat her like any other five year old.. I want to reflect back on all the wonderful things Sky DIDN'T miss out on. No ones life should be defined by a disease.

DILATED CARDIOMYOPATHY



Childhood dilated cardiomyopathy (DCM) is characterized by a dilated left ventricle and systolic dysfunction, and in some patients also by right ventricle failure. It is a serious myocardial disease, usually idiopathic (no known cause), but its infectious, metabolic and genetic aetiologies are increasingly revealed. DCM frequently results in heart failure and sometimes death. It is the most common form of cardiomyopathy and the most common reason for heart transplantation in children.


Affects 6 per one million children a year

Cardiac muscle (the heart) becomes enlarged and stretched out, usually starting in the left ventricle, making pumping blood to the body a difficult task.

Can eventually lead to heart failure

The cause is usually unknown

There is no cure

Some children eventually need heart transplants. Others remain on medication. Some children recover completely (usually only in the first year)

Again, I don't focus on all the things that can go wrong. I choose to focus on all the great thing that have gone right.