Pediatric Heart Expert Forum
LV Noncompaction Cardiomyopathy
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Questions in this forum are answered by pediatric cardiologists, cardiothoracic surgeons and anesthesiologists from The Children's Hospital of Philadelphia. This forum is for questions and support about pediatric heart problems, symptoms and topics such as heart murmurs, palpitations, fainting, chest pain, congenital heart defects (including management and intervention), fetal cardiology, adult congenital cardiology, arrhythmias and pre-participation athletic screening.

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LV Noncompaction Cardiomyopathy

My 17yr. old daugther was recently diagnosed with LV Noncompaction Cardiomyopathy. She had several tests done such as an echo, stress test and a MRI. She was told that she presents with myocardial non-compaction involving the apex of the left ventricle, approximately 80% of the apical part of the left ventricular free wall and approximately 60% of the interventricular septum. Minor involvement of the apical part of the right ventricle is also suspected. Systolic function of both ventricles, preserved. Both right and left ventricular end diastolic volumes at upper limit of normal. Despite rather extensive involvement of the left ventricle, left ventricle shows normal systolic function. So the bottom line out of all the tests her heart showed normal function, normal blood flow, no arythemias. She does not need to be on any medication and has no symptoms. She has been heavily involved in competitive sports since a young child and usually has two or three going on at a time. The doctor has said she needs to give up competitive sports. I wondered if this is necessary especially when the heart is functioning normally. This is her last year of highschool and she has always participated in a majority of the sports as well as competitive volleyball outside of school. We are thankful and blessed that she is functioning well but to give up all her sports would be devastating. She has so much energy and so full of life she says she would rather die doing what she loves then be miserable. The doctor says they dont know much about this rare cardiomyopathy so I wondered if anyone else has had the same kind of recommendation under similiar circumstances and is it normal to give up competitive sports even when presenting no symptoms? My daughter said she could deal with cutting out some of the sports but wants to keep her volleyball. Anyone else's knowledge or dealings with this matter that they could share with me would be greatly appreciated.
773637_tn?1327450515
Dear Alicia,

Unfortunately, without seeing your daughter, I cannot say what, if any, restrictions are required of her.  It does seem good that she has preserved function and has had no specific arrhythmias or problems.  My recommendation is that, especially for something so important as physical restriction in the face of a cardiomyopathy, you obtain a second opinion by a cardiomyopathy specialist.  These are folks who are pediatric cardiologists who specifically deal with these abnormal hearts and can advise you regarding the latest research.
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As I write this, I realize that this is an expert forum. I still want to write this to you as a mother who has raised a child with a severe form of concentic hypertrophic cardiomyopathy. First and foremost, you MUST listen to your child's pediatric cardiologist! He knows what is best for her wellbeing. I have traveled all over the world and this country dealing with more pediatric cardiologists then I care to count; several have become very good friends and one is actually my daughter's godfather; I have yet to meet ONE cardiologist who wanted, or liked, to restrict a child/teen from sports and like activities. For the most part, they hate doing that because they realize the impact it can have on those kids. Go back and talk to your PC about this; many times there are activities that children can do that do not put as much strain on the heart. My daughter, for instance, learned to ride. An MRI and echo are not apt to show arrhythmia problems, not is a stress test UNLESS the arrhythmia shows up at the exact same time the test is being done as the EKG is the primary way to first check for arrhythmias, sometimes something can be picked up that may make a doctor consider the possibility of an arrhythmia issue popping up. Has your daughter had a 24-48-72 hour Holter done or has she had any arrhythmia problems? Sometimes children will have a King Of Hearts monitor put on for 30 days to help check for arrhythmias. Your daughter is 17 years old at this point so unless she is going to college and her sports are helping to fund that education, her sport's career is beginning to come to a close. As a mother, you have to ask yourself: is this sport life she is involved in worth her life?  
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Jeffrey R Boris, M.D.Blank
The Children’s Hospital of Philadelphia
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