Cardiomyopathy and Sports

  HI,
  My 9 year old son has severe Hypertrophic Obstructive Cardiomyopathy.
  Some of the info in his case is: Septal thickness of 23mm, LVOT gradient was
  in the mid 70s but following a septal myectomy in 1996 it is currently in
  the high teens and slowly rising. Ejection fraction stays around 80%, mild to
  moderate mitral valve regurgitation. He also has borderline prolonged QT and
  repolorization abnormality.
  My question to you is could you give me a "understandable" explanation as to
  why he is banned from sports? We left the heart clinic were he was first a
  patient due to many reasons. We found a new clinic and a new pediatric
  cardiologist. They also have told us our son is not to participate in ANY sports.
  I belong to a group for parents with children who have congenital heart defects
  and the majority of them think it is terrible that he has been limited just
  because he has a CHD. Some of the children who are allowed to play sports in
  our group have chd's such as: aortic stenosis, pulmonary stenosis, VSD, single
  ventricle, among others. I was unable to explain why my son can't participate
  in sports, because I guess I don't completely understand why myself! I know
  many of the other children have more complicated CHD's, but are not limited
  in activities.
  Could you please explain why those with severe HOCM are limited and would you
  give your permission for me to put your explanation on my son's web site?
  Thank you for your time,
  Dolly

[CCF CARDIO MD APS]

_
Dear Dolly,
There are certain cardiac patients that are at risk for sudden cardiac death as
occured in your nephew.  Your son is one of those at risk - and for two reasons: the long
QT and the HOCM.  Since we do not understand the mechanism behind this, not only can we not
treat but we can not predict.  There seems to be somewhat of an association of this sudden death
in patients like your son when they participate in physical activity/sports.  So until we understand
the physiology of the sudden death, all that we can do is recommend avoidance of activities that increase
the risk of sudden death for the patient.  Some of the other CHD conditions you mention do not have associated
with them an increased risk of sudden cardiac death with physical exertion.  As for the family history, that probably
makes sudden cardiac death even more likely for your son, however this has not been proven and NO the family history itself
is not the only reason for your son's physical restrictions.  
Any patient with HOCM, regardless of severity is at some increased risk of sudden cardiac death.
We at the Heart Forum do not approve of our informational material being "put on a web site" however feel
free to refer any interested party to the Heart forum and use the archival to look up this question by date or title or
by my code (CCF CARDIO MD-APS), as well as look up other HOCM type questions.
I hope you find this information useful. Information provided in the heart forum is for general purposes only. Only your physician
can provide specific diagnoses and therapies. Please feel free to write back with additional questions.
If you would like to make an appointment at the Cleveland Clinic Heart Center, please call 1-800-CCF-CARE or inquire
online by using the Heart Center website at www.ccf.org/heartcenter. The Heart Center website contains a directory of the
cardiology staff that can be used to select the physician best suited to address your cardiac problem.