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The Back-to-School Silent Killer: Pediatric Cardiomyopathy

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Childrens Cardiomyopathy

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.

Pediatric Cardiomyopathy Awareness

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 doctors 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.

 

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