|Daniel decorated a tree his eldest brother planted, every year that he was here, which looked very much like this.|
Four years ago, when our healthy, comfortable child talked to us, and then walked into the bathroom and collapsed and went into cardiac arrest, and then despite immediate CPR, died, we were told that this could not have been anticipated. He went on to have a negative autopsy, and it was surmised by several groups of pathologists that although he had no structural abnormalities of his heart seen on autopsy, that a functional one could have existed, and no one would have known. We were also told that even an EKG might not have indicated the possibility of his sudden death due to a conduction disorder. We were told that our devastating loss was rare. Over the next four years we found that very little of the above is actually true.
In actuality, sudden arrhythmic cardiac death is the number one cause of death in children who play sports. (Our son had played a challenging game of soccer the day before) Children who have relatives, even elderly ones with conduction disorders such as atrial fibrillation, supra ventricular tachycardia, and certainly sudden death in grandparents, cousins and even first degree family members are certainly at risk. In addition, of those adults and children who experience a sudden arrhythmic episode, the out of hospital survival rate is a paltry EIGHT PERCENT.
Since then, we have met a number of people who have lost a young spouse, a young adult daughter, a college student, teens who ran track, and many others who lost someone due to exactly the same arrhythmic cause as Daniel. To us, Sudden Arrhythmic Death Syndrome doesn't seem rare at all.
Of course, my husband and I since have pushed CPR for everyone since then, and AEDs (Automatic Emergency Defibrillators) since then, in the hope that another family would never have to experience what we have. The fact is, that Daniel got immediate CPR just after his collapse. He also got one dose of epinephrine, and continued CPR, and then later he received an additional dose of epinephrine from us and an an attempted AED shock from the local sheriffs who are also EMTs when they arrived at our house. Then, the helicopter ICU from the University of Virginia arrived on the front yard of the farm and delivered Advanced Cardiac Life Support. All of these things were to no avail. At no time did we see the return of any type of a cardiac rhythm or of respiration or momentary return of consciousness. In Daniel's case, there was no intervention after the incident itself that appears would have saved him.
After the loss of Daniel, we were urged to have cardiac rhythm evaluations ourselves, which we did. One of our children went on to have a rather broad cardiac mapping with ablation. The others had EKGs, and cardiac history and physical and an echocardiogram. Daniel had no abnormalities, why would they ?
Despite evaluations for my husband and myself which were initially negative, I have gone on to have paroxysmal atrial fibrillation myself.
One of the other pieces of information which was not provided to us at the time of Daniel's passing, is that there IS a test for cardiac arrhythmic sudden death. It is estimated that 12 million people in the US are at risk for a sudden arrhythmic death. Yet, in general, only astronauts are checked for this.
Microvolt T-Wave Alternans is a trademarked name for a type of test which can rule out those patients for whom sudden arrhythmic death is likely. This allows cardiologists to focus on those for whom this may be a possibility. This test requires the patient to undergo a low level cardiac stress test and then to have specialized equipment look for an alternating t -wave pattern. The alternating impedence of the t-wave pattern, as shown below, is a risk indicator for sudden arrhythmic death.
|Note the alternating nature of the second pattern|
(Please see: http://www.cambridgeheart.com/mtwa/mtwa for more information. )
Without using this particular test, no cardiologist can completely or fully assess the chance of a particular patient experiencing a sudden cardiac arrest secondary to arrhythmia. Just now, this test is done on astronauts but very few others otherwise, and it has never been done on any of the members of my family, some of whom have simply been medicated in the hopes of mitigating our risk.
The fact is that this relatively simple test has had FDA approval for 13 years and a reimbursement code (#93025) for six years. It isn't being used. Why not ?
More general information on sudden cardiac arrest in teens: