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 “Arrythmia 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 Children).
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. For example, in Virginia law requires
“a medical examiner to determine the cause and manner of death of persons who die under specific circumstances.”
VDH Department of Health
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.
This is where organizations like Boston Children’s Hospital Robert’s Program on Sudden Unexpected Death in Pediatrics (SUDP) and Sudden Unexplained Death in Childhood Foundation (SUDC) come into play.
Since 2023, we have been working with both organizations in an effort to find a true cause for Joel’s death. The research process is complex. It takes some incredibly experienced health professionals and researchers to look through the entire family health history, whole genome sequencing (WGS) multiple genomes, and pouring through a significant amount of medical research. All told, the average cost per investigation is about $25,000. This is just for the research and this doesn’t include the costs associated with grief support.
In these rare cases, grief support extends to helping families navigate the research process. Families that want to go down this road must make critical decisions before arrangements can be made. For example, the decision to bank DNA must be made — to do this is a multistep process. If you decide to bank DNA, blood samples must be taken and stored in certain ways to preserve the DNA. This is just the first step. What follows is a highly complex and expensive process that requires experts and very complex genetic testing.
So this is where we are today. We believe working with the Robert’s, we might ultimately find a plausible cause. But until then, we wait as we have done since 2023.
Fortunately or unfortunately, we’ve learned quite a bit in this process. Having obtained this “wisdom”, we feel an duty to support others that 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, their future kids, and extended family. Ultimately, for the sake of science, I feel bound because it might help someone else.
“Research is creating new knowledge.” – Neil Armstrong
If you are reading this and are finding yourself in the same situation, I am so sorry for your loss. We are here for you. Do not hesitate to contact us, but most importantly, contact the Robert’s Program or SUDC. Do not hesitate. It’s very difficult making these kinds of decisions in the fog of this immense grief.