September is Pediatric Cardiomyopathy Awareness Month. One of the reason’s September was chosen, is because Pediatric Cardiomyopathy is also considered the “Back-to-School Silent Killer”. Some even call it the “death by exercise” disease. Many children suffer from it, with their parents and even doctors not knowing until it is too late. That is why there needs to be more awareness to prevent the worst.
Maybe you have never heard of cardiomyopathy. There was a time I had never heard of it either. Then there was this sudden moment, that my whole world was shaken by the cardiomyopathy diagnosis of my baby.
My sweet little baby who had been sick for around two months. My sweet little baby who had seen her Pediatrician over a dozen times during this period. My sweet little baby who rarely cried before, now cried all the time as if she was in pain. My sweet little baby who saw a different doctor to get a second opinion. My sweet little baby who then saw an ENT because I was told her fevers and heavy heartbeat, was due to an ear infection that just couldn’t be seen. My sweet little baby who saw a Cardiologist (because of my persistence) on Thursday, that told me they didn’t have time to do an echocardiogram even though her EKG came back abnormal. My sweet little baby who I rushed to the ER on Monday morning because her heart was beating so fast, I knew there was something wrong. My sweet little baby who had to wait in the ER waiting room for almost 10 hours before they would do an echocardiogram. My sweet little baby who rode in her first helicopter one hour later, on her way to a city 4 hours away, because her heart was only functioning at 9 percent.
I. Almost. Lost. Her…
When I think back about that time, it still devastates me to think of all the what ifs. We were down to her very last moments. Nobody saw it. None of the doctors saw it. It was there the whole time. The doctors made me feel as if I was crazy, but I KNEW because I AM A MOTHER. I knew my child. I followed my intuition. But what if I hadn’t.
On that Monday morning, I had to call into work before we left for the ER. My boss wasn’t too thrilled because I had been calling in often that month because of my baby being sick. I had a planned meeting that morning with a big company to do a presentation, so my boss wasn’t very sympathetic. When I got off the phone, I looked at my baby girl, whom I had already strapped in her carrier. She smiled at me. For a second, I thought maybe this is just a crazy virus. Maybe I am making a mountain out of a mole-hill. Maybe I should go to work, then come home and take her to the ER. But I knew better. My intuition said TAKE HER NOW! And thank God, I listened.
For the next couple of weeks, we lived in the Cardiac Intensive Care Unit (CICU) in a city I had never been too. She was hooked up to many machines, and had IV’s everywhere they could stick them. She had blood transfusions, anti-body transfusions, she was on 6 medications and the doctor’s didn’t give me much hope. These doctors knew what they were doing, and they knew what they were dealing with. In fact, she was being seen by the top cardiomyopathy cardiologist on the east coast.
I prayed, and prayed. Faith was all I had. I gave it to God because I had no control. The doctor’s were doing their best, but with a grim outlook. I filled out all the paperwork to register my sweet little baby for a heart transplant, but I was told that she was too weak to be approved. Then a miracle happened. She started responding to medicines. She starting coming around. After a week of being there, she sit up. For a moment, she played with her favorite piano toy, that her Grandpa had drove 4 hours to bring to us. She smiled. I HAD HOPE.
That was 8 years ago. We had a long road of recovery consisting of many medications and doctor visits. We are not out of the woods, because there is no cure. For now she is stable, and I pray everyday that continues. Cardiomyopathy is tricky. Sometimes it shows NO SYMPTOMS.
Anytime I hear about a child suddenly dying, I always wonder if it due to cardiomyopathy. When you hear about a young athlete who dies at practice, chances are, cardiomyopathy will be the cause. There is a YouTube family called the Bratayley’s that my daughter loves to watch. Several years ago, their son suddenly died. As my daughter was devastated, I couldn’t help but wonder if cardiomyopathy was the cause. Then it was announced that, indeed, it was. We have lost other “diagnosis friends” that we have found along our journey.
It is important to know your child’s heart. The Children’s Cardiomyopathy Foundation uses the hashtag #knowyourheart. This foundation was created by a mother and father who lost not just one, but two children to cardiomyopathy. While the mortality rate for pediatric cardiomyopathy is higher than ALL childhood cancer combined, research spending on pediatric cardiomyopathy is only a fraction (less than 3%) of what these other well known diseases receive. That is why awareness is key.
Top Ten Things to Know About Pediatric Cardiomyopathy
1. Cardiomyopathy is a chronic disease of the heart muscle that affects the heart’s ability to pump blood. The disease can present in different forms and may, in severe cases, lead to heart failure and/or sudden death.
2. There are different forms of cardiomyopathy. The World Health Organization recognizes four forms: dilated (DCM); hypertrophic (HCM); restrictive (RCM); and arrhythmogenic right ventricular (ARVC) cardiomyopathy. Left ventricular non-‐compaction cardiomyopathy (LVNC) increasingly is being recognized as another form.
3. Cardiomyopathy is a leading cause of sudden cardiac arrest in young people. The Centers for Disease Control and Prevention has estimated that every year, approximately 2,000 people younger than 25 will die of sudden cardiac arrest (SCA) in the United States. SCA is the top cause of death on school property.
4. Cardiomyopathy remains the leading cause of heart transplants in children over one year of age. Cardiomyopathies result in some of the worst pediatric cardiac outcomes, with nearly 40 percent of children with symptoms receiving a heart transplant or dying.
5. Cardiomyopathy can affect any child. Cardiomyopathy can occur in any child regardless of age, race, gender or socioeconomic background.
6. There is tremendous variation in symptoms among the different types of cardiomyopathy. Common symptoms include difficulty breathing, fatigue, exercise intolerance, fainting, dizziness or light-‐ headedness, chest pain, heart palpitations, and swelling in the ankles, feet, legs, abdomen and veins in the neck.
7. Cardiomyopathy can be inherited genetically or acquired through a viral infection or cancer chemotherapy. Not all is understood about the genetic and molecular mechanism of the disease in children, and up to 75 percent of those diagnosed do not have a known disease cause.
8. Currently there is no cure. While there are surgical and medical treatments that may improve quality of life, the damaged heart cannot be repaired in most cases. A heart transplant may be necessary if the heart continues to weaken and medical management is unable to prevent the heart from failing.
9. Knowing your family cardiac history is essential in preventing premature death. A discussion of your family’s heart health with a geneticist, cardiologist or pediatrician can help assess your child’s risk for cardiomyopathy.
10. Many children with cardiomyopathy have activity restrictions and psychosocial issues related to living with a chronic illness. A diagnosis usually results in more frequent doctor visits, daily cardiac medication and possibly surgical interventions. Other modifications include dietary adjustments, restriction from competitive and contact sports, and school accommodations.
So, now you know what cardiomyopathy is. It is scary, but if the diagnosis is caught in time there is hope. If you feel like there is something off with your child, then listen to your intuition. Doctors are wonderful, but they don’t know everything, they are human after all.
For more information please visit www.childrenscardiomyopathy.org or contact the Children’s Cardiomyopathy Foundation at 866.808.CURE. This foundation has been my answer key. It has helped so many parents to understand the diagnosis and even connect with other families.