Cardiomyopathy: How to Explain Your Child’s Heart Condition

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You may (or may not) remember from geometry class that all squares are rectangles, but not all rectangles are squares. It takes a little background explanation to figure that one out.

The same is true for cardiomyopathy. All cardiomyopathy patients have heart disease, but not all heart disease is cardiomyopathy. When your child has cardiomyopathy, learning how to explain the disease to your close friends and family can help you convey important milestones and other information about your child’s progress.

Omaha_CardioMyopathyExplained01Although cardiomyopathy is more common in adults, kids can have it, too—regardless of gender or race.Omaha_CardioMyopathyExplainedHeartDiagram

The Basics

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Although cardiomyopathy is more rare in children than adults, according to the Children’s Cardiomyopathy Foundation, cardiomyopathy is the main reason for heart transplant in kids. But, in the pediatric heart transplant world, infants undergo transplant for cardiomyopathy less frequently than they do for congenital heart disease.

Cardiomyopathy can eventually lead to arrhythmias (irregular heartbeats), heart valve conditions and heart failure.  And when symptoms in young children lead to an early diagnosis, doctors take the case very seriously. Diagnosis at a young age can require aggressive treatment.Omaha_CardioMyopathyExplained03

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The 4 Types of Cardiomyopathy

There are 4 general types of cardiomyopathy, with each child’s heart condition falling under 1 of the 4 categories.

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This rare form of cardiomyopathy happens in the right ventricle—specifically if tissue there dies and is replaced by scar tissue.

As the scar tissue replaces normal tissue, it interrupts signaling in the heart, and an irregular heart beat can develop, according to the American Heart Association.

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The heart muscle cells enlarge, thickening the ventricle walls, explains the American Heart Association. That thickening can block blood flow, but doesn’t always.

What does happen is that the ventricle space becomes smaller, meaning the left and right ventricles can hold less blood. The ventricle walls stiffen, raising blood pressure and making it more difficult for the heart to pump blood through the body.

As a result, damaged heart muscle cells may misfire, leading to irregular heart beats. That makes exercise dangerous for some people, according to the American Heart Association.

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This form of cardiomyopathy causes the heart’s main pumping chamber (the left ventricle) to stretch, according to the American Heart Association. It enlarges the left ventricle and eventually stretches the right ventricle as well, before moving to the upper chambers.

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The ventricles become rigid as scar tissue replaces normal heart tissue, says the American Heart Association. This keeps the ventricles (lower chambers of the heart) from relaxing and filling with blood. As a result, the upper chambers (atria) expand.

That combination lessens blood flow within the heart, weakening the muscle and leading to arrhythmias.

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This form of cardiomyopathy occurs when the left ventricle—the heart’s main pumping chamber—is spongy and has a mesh-like network of muscle bands known as trabeculations, the Cardiomyopathy Association explains. Doctors are still studying this condition to find out more about what causes it and how it can be treated.

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Keep in mind: A cardiomyopathy diagnosis doesn’t mean you should panic. The disease has varying degrees of severity and doesn’t always lead to transplant. Mild forms can be managed with medicines alone, and only more severe cases may require pacemakers and defibrillators—with potential for heart transplant as a last resort.

Barb Roessner

Hi, I'm Barb, and I'm a Physician Assistant and coordinator of the Heart Failure and Transplant Program at Children's Hospital & Medical Center in Omaha. I work with patients and families at every step of the journey, from diagnosing their child's heart condition to my favorite part—calling them to say "We have a heart."

14 Responses to "Cardiomyopathy: How to Explain Your Child’s Heart Condition"

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  1. Millie

    July 8, 2014 at 1:04 pm

    Why has Left Ventricular Non compaction been left off?

    Reply
    • Barb Roessner

      July 8, 2014 at 1:49 pm

      Hi, Millie. I was focusing on the most common types of cardiomyopathy, but you make a good point. We can add a section about Left Ventricular Non-compaction. I’ll let you know when it’s updated.
      Thanks for reading!

      Reply
  2. Carlyn Clark

    July 8, 2014 at 11:12 pm

    Yes please; would love to see LVNC included.

    Reply
    • Barb Roessner

      July 10, 2014 at 10:13 am

      Millie and Carlyn,
      Just added LVNC. Thanks so much for reading.

      Reply
  3. Robyn

    July 9, 2014 at 8:04 am

    My daughter has thickening of the heart muscle which caused her to have a cardiac arrest, basically the electricity pumping her heart stopped, what type is this?

    Reply
    • Barb Roessner

      July 10, 2014 at 10:41 am

      That sounds like hypertrophic cardiomyopathy, but confirm with your daughter’s doctor.

      Reply
  4. Michelle DePaepe

    September 5, 2014 at 1:25 pm

    Just found this website on a CM FB page! My daughter was born with WPW (5 left-sided pathways, although we didn’t know until her cardiac arrest 3 years ago how many pathways) and dx’d at 3 months old with HCM. After SCA May 2011 and 5 ablations and 2 loop recorder procedures later, we’ve learned that she actually has recurring WPW and LVNC with hypertrophic tendencies… Been a tough time for her adjusting emotionally. Stable for now, but I wasn’t aware that stroke was a possibility, albeit it makes perfect sense. what’s also odd is she has a slightly higher than kid-norm Serum Iron with slightly higher than kid-norm hi Iron sats as well. And what’s really unique? While for the first time since her SCA we’ve finally had an ECG/ECHO with no changes in 1 year, just 4 weeks ago at an optometrist appt, she was dx’d with ocular hypertension…despite being on a beta blocker! Canadian sites do not have much, would you have information on LVNC or CM in general connection (if any) with Ocular Hypertension? thanks so much!

    Michelle DePaepe

    Reply
    • Barb Roessner

      September 8, 2014 at 2:03 pm

      Hi Michelle,
      Glad you found our blog. I can only imagine how tough it’s been for your daughter—and for you. We can definitely include a couple of blog posts on the connection between ocular hypertension and CM. Not a problem.

      Reply
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  6. Leona

    February 9, 2016 at 9:20 pm

    Hello my husband has hypertrophic cardiomyopathy with this being said when last child was born she had what they said was a hole in her heart so they watched a gave her up to age 1 1/2yrs for it to close well it didn’t so that’s how we ended up seeing a pediatric cardiologist when he asked about family history that’s all it took he said he wanted to see all 3 of my children my oldest had to have a ASD Device placement a few months after her first visit and my son and daughter had to have the genetic testing done because they wanted to make sure what they seen on echo and matched with the results from that

    Reply
    • Leona

      February 9, 2016 at 9:44 pm

      Sorry tried to backspace and hit post anyway my son was diagnosed with mild hypertrophic cardiimyopathy the Dr was really concerned made him due limited exercise telling us don’t allow him to break a sweat or strain himself and to avoid extreme heat and cold and be prepared that all through truly rare little ones his age can be lost due to this condition because it can get worse without one knowing so he seen him every couple months at first then since it wasn’t getting worse we did once a year but this my question to you sorry it took so long to get to it Why now that my sons first Dr of like 7 yes has retired did his new Dr come in and change everything telling us that there is more thickness than before but wanted my son to do all exercises for him only to avoid contact sports and he put my son on Atenolol 25mg 1 a day and sees him every 6 months when asked they told he changed it up because he is new school that the old doc was old school and to extreme and concerned with everything so I WAS WONDERING IS THIS NORMAL

      Reply
      • Barb Roessner

        February 16, 2016 at 1:37 pm

        Leona, let me gather some information and I’ll get back to you in a few days.

        Reply
      • Barb Roessner

        February 18, 2016 at 10:40 am

        Thanks for reaching out, Leona.

        Different doctors have different approaches to managing hypertrophic cardiomyopathy and there are several variables that go into determining the best method because not every case is the same.

        I would encourage you to seek a second opinion if you are not comfortable with your current doctor’s approach. A member of our medical team would be happy to meet with you, review all of the medical records, examine your son and provide you with their recommendations. Feel free to call our office at 402-955-4339 to schedule a consultation visit.

        Reply
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