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| Diagram of Normal Heart vs Heart with Dilated Cardiomyopathy |
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Dilated cardiomyopathy occurs when disease affected muscle fibers are enlarged or stretched (dilated) in one or more chambers of the heart. Usually, the enlargement begins in one of the two lower pumping chambers (left ventricle) and then proceeds to the heart's upper chambers (atria) as the condition progresses. Eventually over time, all four of the heart's chambers are affected as the heart tries to "compensate" its weakened condition and poor contraction by further stretching. As the heart enlarges, it decreases its efficiency in pumping blood through the body. When the disease progresses to congestive heart failure, fluid can build up in the lungs, liver, abdomen and lower legs.
Dilated Cardiomyopathy is usually an acquired condition in adults but with children most cases are of an unknown cause. Of those acquired cases, the disease can be caused by acute myocarditis an inflammation of the heart muscle from a viral infection. Commonly caused by a group of viruses called Coxsackie B viruses (with symptoms similar to the everyday cold), the body's normal defense system malfunctions, damaging heart tissues while attacking the invading virus.
Since cardiomyopathy is a progressive condition, the heart can deteriorate to the point where it does not respond to medication or surgery. A heart transplant is the last resort when the patient reaches the "end stage" of the disease and experiences severe disability of the heart and heart failure symptoms.
In Zara's case, she had caught a nasty caugh when she was a few weeks old and while the cold symptoms disappeared her feeding decreased and she becmae very lethargic and slept most of the time. Being a baby we thought she was just a quiet sleeper and when her feeding decreased to the point where we were really concerned none of the doctors could figure out why and sent us home. Eventually I took her to the ER when she hadn't fed any more than a few sucks of milk, and one very very thorough Pediatrician on call (who we believe is our angel) noticed her laboured breathing and heard a murmur. An x-ray and later we discovered her heart was so enlarged it was taking up half her chest cavitiy and was dilated to more than double its size.
Once transferred to the Children's Hospital and an echo had been done, she was diagnosed with DCM and was in severe end stage heart failure. they told us she may die at any moment, or may have a few days left, at best maybe a month or two. They started her on her meds immediately and when that didn't change anything they started her on the Carvedilol. She spent the next 2 months fighting for her life. She vomited every feed and had blood work and various tests conducted daily. It was touch and go.
Today, she continues to prove the doctors wrong as we manage her medications and care, while her body manages and adjusts to her abnormal heart. The doctors can't believe she is being kept alive by a heart which only functions at 18% capacity, compared to a normal healthy heart which functions at 80-90%.
Visit the Children's Cardiomyopathy Foundation website to read more about Dilated Cardiomyopathy. |