Published in the Huffington Post
Rare is defined as seldom occurring or found, uncommon. There are only 24 known manuscripts of the Magna Carta. There are only 4,480 black rhinos left on the face of the earth. This past Thanksgiving, the Grand Canyon was filled by an inversion cloudthat only happens once every 10 years.
Rare can make things intriguing and desirable. It can turn people into collectors. If, however, the word is used to describe a medical condition, it gives us permission to be dismissive and turn away.
Last month, Patrick Awosogba, a freshman basketball player at Rutgers University, collapsed and died. A newspaper article reporting his death stated “although rare, the condition [that caused his death] is the most frequent cause of sudden death in young people.”
Ten years ago, my son, Simon, died from an undetected heart condition. Ever since, I’ve heard this claim. Heart conditions that lead to sudden cardiac arrest (SCA) and death in children are rare. But is it?
The particular condition that took the life of Patrick is called hypertrophic cardiomyopathy. It is estimated to exist in one out of every 500 people. I’m wondering, if one out every 500 rhinos on earth were black, would they still be considered rare? Probably not.
I decided to check out the National Organization for Rare Disorders (NORD). It maintains a rare disease database. I didn’t find cardiomyopathy. I also didn’t find Long QT Syndrome. That’s the “rare” condition that I was diagnosed with after Simon died. This condition exists in anywhere from 1:2,000 to 1:7,000 people, and is responsible for up to 15 percent of all sudden infant deaths (SIDS). There are about ten conditions that can lead to sudden cardiac arrest in children.
So why do people think kids dying of SCA is a rare event? There are two reasons. First, we don’t know how many kids die from SCA because we’ve haven’t been tracking it. The American Academy of Pediatrics suggests the number is 2,000. I have seen other groups that put the number anywhere at 7,000.
The good news is that in October 2013, the US established a registry to track sudden death in the young. This registry is being piloted in ten states and will gather comprehensive data on the deaths of children between the ages of 0 to 24. This is great start, but when the World Wildlife Federation is counting the black rhino population, do they just focus on 20 percent of the grasslands in Africa?
The other reason is that some medical experts pretend that we know the number, and that it is low. These researchers used Internet searches and insurance death records to track the number of student athlete sudden deaths, and then marketed it as an official U.S. registry. That’s not very “expert-ish,” and it’s a little misleading to us laypeople. Isn’t there a more scientific and reliable way?
Patrick died at college playing basketball. His death made the paper. My son, Simon, didn’t. They both died of sudden cardiac arrest, but only one was counted. Our statistics are already off by 50 percent. That’s an F.
Let’s make sure that our children are counted as closely as the black rhino. Let’s make sure our research in this area is as meticulous as the process of authenticating a copy of the Magna Carta. Before we casually throw around a term, let’s make sure that sudden death really is as rare as inversion clouds in the Grand Canyon.