When a child is diagnosed with an Arrhythmia

I wanted to throw out some thoughts on looking for and finding heritable heart arrhythmia in children. The spectrum of opinions on whether we should even be looking for heritable disease and what to do once we find it is broad. When I began my journey into the world of Inherited Heart Rhythm Disorders (IHRD's) I thought the answers to all of these questions were self-evident but I now recognize that there are valid opinions on all sides. This blog is a random unstructured list of questions and concerns that have no right and/or wrong answer. These are immensely complex medico-legal, moral, ethical, philosophical, religious, societal, familial issues and a 500 word blog does not even make the tiniest scratch on the tip of the iceberg.

• Why would we want to know that our child has an Inherited Heart Rhythm Disorder? Because there are effective therapies for most IHRD's and because left untreated IHRD's may result in sudden death would be the obvious answer. That said there are people that choose to play the hand life has dealt them without taking action to change what they believe fate may have in store for them.
• Will a positive diagnosis disqualify my child from buying life insurance? Almost assuredly. However, will a cheque from an insurance company bring back your child or truly compensate for your loss? There are numerous ways to invest on your child's behalf that will pay equal or greater future dividends. The term "life insurance" is an oxymoron. I'm blown away when people give this as a reason for not testing their at-risk children.
• Will a positive diagnosis limit my child's career choices? Absolutely. Of course we all have limited career choices ... despite my desire to play professional hockey I was born with a serious talent deficit.  If your brother tests positive for an IHRD should you get tested or simply carry on with your plan to become a commercial airline pilot? Who will be responsible if you die at the controls and the plane crashes killing everyone on board?
• What if a false positive wrongly curtails my child's participation in athletics? The first question I ask in response to this concern is "When is a diagnosis considered positive?" If an initial ECG results in further tests being ordered is that a positive diagnosis or is it simply an ECG that suggests further testing is required? If follow-up testing takes two months and the Doctor recommends no competitive athletics until she has made a definitive diagnosis what has been lost ? Will missing a few game and practices while you wait for the right diagnosis change your child's career path, especially if they are truly gifted? Will you be able to live with yourself if your child dies because you chose not to miss the "big" tournament?  Everyone with skin in this game knows a family that made the wrong decision.
• What if a true positive ends my child's athletic career? Very few of the truly great or even  good people on this earth are elite athletes. Of the elite athletes that are good or great people it is not their athleticism that makes them that way. If a child has special attributes that allow them to be a great athlete they will be able to apply those attributes to other areas of life which may include coaching or officiating in sport. Most people accomplish very little after their death.
• What if my child refuses to give up sport? You are the parent, you must decide what is best for your child. Prior to a child attaining the age of majority it is up to parents and guardians to act in the child's best interest.
• What if I test positive and my sister refuses to have herself or her children tested? This is almost too scary to contemplate, but it happens. I guess the best starting point is communication, and lots of it. Talk to everyone that might be able to help and exhaust all of the possibilities while keeping in mind that you do not have the final say.
• What happens when Personal Health Information Privacy Laws come into conflict with the best interest of a minor child? This is a very thorny issue and people with many letters behind their names could debate this one for days. These often poorly formed laws were never intended to place a Doctor in the position of choosing between his career and the life of a child. 

Above are eight questions out of the hundreds of questions that can and should be asked when contempalting heritable disease. Over the past decade I have been exposed to many sides of these issues. With each passing year I am less astounded by the positions that people take on these matters and hopefully more accepting of views different than my own. Always I hope and pray that where children are involved preserving life is the foremost priority.