Yeah, But You Don't Save Lives

Yeah, But You Don't Save Lives
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These students attended a community heart screening and discovered serious heart conditions.

These students attended a community heart screening and discovered serious heart conditions.

Simon's Fund

Funny story. My son died twelve years ago from an undetected heart condition. My husband and I started this foundation to provide free heart screenings for kids. We were thinking that if other parents had the chance to check their kids’ hearts, maybe their kids wouldn’t die from detectable and treatable heart conditions.

I felt good about what we were doing. We screened over 14,000 students and helped over 100 discover heart conditions. We’re part of a robust and passionate community.

A couple of months ago, a reporter called. During the interview, she suggested that we had “no evidence that screening adolescents with electrocardiograms prevents deaths.”

Stop for a minute. Read the full article here for yourself. It was published by National Public Radio. The rest of my post will make more sense.

I never thought I’d be challenged this way. I thought that helping parents realize that sudden cardiac arrest was not just an adult thing was productive. I believed that making parents, students and coaches aware of the warning signs was meaningful. I assumed that providing free heart screenings, so that others families could find the conditions and avoid the despair and grief that I did not, was worthwhile.

I did not realize that the value of my efforts would be judged on whether I could prove that I saved a life.

We never claim to save lives. That is presumptuous. Our website says “lives changed.” But should that fact really matter? As a parent, do you want to take that chance with your child?

Talk to the parents of these children who discovered potentially fatal heart conditions at screenings. They’ll tell you, without hesitation, that the ECG saved their child’s life. Or, watch this, and hear directly from the kids. Where were these stories and perspectives in the article?

The article only shared Daniel’s story. He attended a screening, was flagged for a serious condition, and was later cleared, but not until his family incurred significant costs and suffered anxiety. This story is horrible. It haunts anyone who provides heart screenings because heart screenings were born out of the desire to spare other parents from unimaginable pain and loss (which are significantly worse than anxiety).

It is very misleading to only speak of Daniel, and willfully ignore the brighter futures of Kyle, Drew, Katie, Alaysia, Whitney, Valerie, Melissa, Jake and others. How about my future? Following Simon’s death, I was diagnosed with Long QT Syndrome. Do you think that Simon saved my life? I do.

Besides, how can we really prove that an ECG screening saves a life? Can we prove that a mammogram saves a life? How about a colonoscopy? We can prove they lead to diagnoses (sometimes false ones). But how can we prove they save lives?

I’m not a doctor. I didn’t even care that much for science back in school. But this is what I’m thinking . . .

Let’s find ten kids with heart conditions. We’ll have to detect the conditions at a community screening with an ECG or my experiment won’t work. We won’t refer her to a clinic for more testing or treatment. We’ll just wait. Every year, we’ll check back to see if she or the others are still alive. After twenty years, we’ll write a killer research paper and cite the percentage of kids who died but could have been saved with treatment (and since we used 10, the math will be super easy to figure out).

I am not suggesting that heart screenings are perfect - far from it. There are real problems that have to be addressed. But, here’s the truth. The “problem-causing” screening organizations are the ones demanding answers and driving the science.

The Seattle Criteria, which has dramatically driven down the false positive rate in student athlete heart screenings, evolved out of the screening community. The updated criteria were released this week in the Journal of American College of Cardiology.

The impact that anxiety has on students who attend heart screenings was studied by the screening community. The emotional impact is very low.

Evaluating whether an ECG improves the chance of detecting heart conditions during a standard physical exam was funded and studied by the screening community. I know . . . we still can’t prove that the conditions would have killed those thirteen NCAA athletes (ten of whom only found their conditions after getting an ECG).

Interestingly, in an effort to cast doubt on screenings, the article quoted three doctors involved in a two-year-old NIH registry that tracks sudden death kids; an effort by the Cardiac Safety Research Consortium to standardize the screening process; and a four year screening pilot program in Texas. All three of these initiatives were driven and/or funded by the screening community.

The article goes to great lengths to expose all of the alleged harms of ECG screenings, yet fails to explore the reality surrounding kids who die, or are saved with an automated external defibrillator (AED). When a student drops dead, we are horrified. When a student is saved with an AED, we are relieved. But, in both scenarios, the students were failed by the medical system. They had wellness exams. The had sports physicals. Their families were consistently assured that their child was fine. Is that acceptable or should we acknowledge that the status quo is flawed and can be fatal?

Charities Push for More Data and Better Heart Screenings. This could have been the title of the article. It would have conveyed the uncertainty around screenings. At the same time, it would have honored the lives of our children and the sacrifices we have made to protect them. Not our children. Our children are dead. Your children.

Instead, this article suggested that we are part of the problem. Honestly, after losing my son, that’s one burden I never thought I’d have to bear.

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