I wanted to publish a response I wrote to a blog posting of a pediatrician from Seattle. Her blog focuses on providing parents with practical guidance and general information in the world of pediatrics. Her most recent post "Sudden Cardiac Death: What Parents Can Do" is a nice piece and provides general information about sudden cardiac arrest in our youth. I encourage you to read the post as it provides good information we should all know, however as most guidance goes, her article is not addressing the real issues...
MY REPLY:
As a parent who lost a 13 year old to sudden cardiac arrest as a result of hypertrophic cardiomyopathy, I want to respond to your article and call out the need to go beyond a reposting of the same information over and over again. Although I applaud your efforts to educate and raise awareness, little is published about how serious this problem really is. Not just the same data being regurgitated over and over again, but someone to talk about how little the medical community really understands about sudden cardiac arrest in our young.
First and foremost, the medical community appears to be driven by statistical data surrounding sudden cardiac arrest in the young that is neither valid nor germane to truly driving to a ubiquitous solution to the problem. The data collect and published is not scientific; it is based upon hearsay and is based on the aggregation of media publications of youth who have suffered sudden cardiac arrest (SCA). Therefore, the data is merely a hypothesis at best and should not be used as guiding principle.
Although not widely known by the general public, our medical examiners, coroners and those who conduct post mortem examinations are grossly negligent in the identification of specific causality of death, especially surrounding sudden cardiac arrest in youth. Organizations like The National MCH Center for Child Death Review find it very difficult to garner accurate statistical data on causality due to lack of adequately trained and regulated medical examiner professionals. I would argue then that a substantial number of deaths in our children, especially those where cardiac arrest occurred is either not identified or misdiagnosed at point of post mortem examination.
The medical community in the United States lacks resources in the area of pediatric cardiology. The delta between resources that are available and what are needed is an alarming issue. I would argue that those in the practice of pediatric cardiology, if reasonably staffed, would be acting more pro-actively to identify issues prior to a tragic event taking place. Unfortunately, with the laws of supply and demand, resources and expertise required to absorb routine cardiac screenings as part of a well-child examination appears to be out of reach. This is something the medical community needs to remedy by training all cardiologists how to comfortably identify anomalies of the heart, regardless of patient age.
There is a fear that if we screen children for cardiac issues, there may be instances of false positives. As a parent, it would be very upsetting if my child were diagnosed with a false positive. I can understand the inconvenience, consternation and stress it could cause. However, the alternative is one of irrevocability. I would trade a thousand false positives to have my son sitting next to me. Not unlike the false positives that occur in all of medical testing, cardiac screening evaluation will improve as the practice becomes routine and those conducting the screens are adequately trained.
Finally, the readers should understand that the biggest argument against proving pro-active cardiac screens for our children is cost. I can empathize with this argument, however as a parent who lost a child to SCA, I would have foregone a week’s worth of coffee’s or bought the $80 cleats instead of the $125 models to pay for a heart screen. There is a groundswell taking place in this country where community based foundations are driving screening for our kids. With support of progressive physicians and medical professionals we’ve seen evidence where the cost of a pro-active cardiac screen to under $20 per child. In some cases, well under $20. I ask, what is the value of a human life, especially that of a child?
