Sudden Unexplained Death in Childhood.

To say February 4, 2023 changed things for us is a gross understatement. It was that morning that I learned my beloved son had passed away at 15 years old in his sleep. There was no immediate cause of death — all of the usual suspects, and then some, being ruled out.

The official cause of death on the death certificate was "arrhythmia of unknown origin," ICD code I49.9. In 2023, Joel was one of 11 between the ages of 10 and 15 with this cause of death.

The assumption is that his heart just stopped working during his sleep — some misfiring that caused it to stop. There is really no way to tell. In reality, Joel's case is one of SUDC: Sudden Unexplained Death in Childhood.

Nobody knows the real number

There is not really a good way to know for sure the true number of unexplained deaths, because states and counties have different laws that govern autopsies. In Virginia, the law requires

So in some places, medical examiners can't close an autopsy if the cause of death is unknown. Regardless, sometimes finding out the cause is well outside of their capabilities or capacity.

What it takes to find an answer

Since 2023, we have been working with Boston Children's Hospital's Robert's Program on Sudden Unexpected Death in Pediatrics and the SUDC Foundation in an effort to find a true cause for Joel's death.

The research process is complex. It takes incredibly experienced health professionals and researchers to look through an entire family health history, sequence multiple whole genomes, and pore through a significant amount of medical research.

In these rare cases, grief support extends to helping families navigate the research process itself. Families who want to go down this road must make critical decisions before arrangements can even be made. The decision to bank DNA has to be made almost immediately — blood samples must be taken and stored in specific ways to preserve it. That is only the first step. What follows is a highly complex and expensive process requiring experts and very complex genetic testing.

So this is where we are today. We believe that working with the Robert's Program, we might ultimately find a plausible cause. But until then, we wait, as we have done since 2023.

Why we keep going

Fortunately or unfortunately, we've learned quite a bit in this process. Having obtained this wisdom, we feel a duty to support others who might be facing similar situations. Finding a cause of death is important, not just because we want to know, but because our girls might be at risk, and their future children, and extended family. Ultimately, for the sake of science, I feel bound — because it might help someone else.