Our Life Without Emily: Flu, Fear, Guilt and Regret
By Joe Lastinger, Board Member, Families Fighting Flu
My daughter, Emily, should have started high school this year full of excitement and potential. Her teachers would ask her, “Are you Chris’s little sister?” or “Are you Andrew’s little sister?” In my head I imagine her earning high marks in advanced classes, joining student council, playing volleyball and basketball and having a great group of close friends. Now I realize that it might not have turned out that way. It’s quite possible that Emily would have entered high school at the peak of her teenage rebellion and might not even be on speaking terms with her mom and me. We will never know, because she died suddenly and tragically from influenza when she was only 3½-years-old.
Emily died from influenza in 2004. She died in our bed, in her pajamas, watching cartoons – just hours before we were scheduled to take her back to her pediatrician to have her looked at again. Doctors have terms to describe how children like Emily can be so sick and not necessarily appear so…it’s called “compensation”. Children, we learned, can sometimes compensate for illness…until they can’t anymore.
If I had to describe how my wife and I thought about influenza – “the flu” – before Emily died from it, I would compare it to lice. I know that seems like a silly comparison, but chances are most parents at one time or another have had the unpleasant experience of dealing with lice. It’s a nuisance, cleaning hair, searching for nits, laundering, etc. You hope that the rest of the family doesn’t get it. You are kind of mad that it happened at all. It messes up your family’s busy schedule. You worry that other parents aren’t being diligent and will end up re-infecting your kids (well, at least we did). Maybe you wonder who started this whole mess to begin with.
But, we couldn’t have been more wrong. Influenza kills tens of thousands of people in the U.S. every year. You don’t have to be old, sick or immune compromised. Influenza kills healthy adults and children (like Emily) every year. We’ve spent the last decade working to reduce the number of kids that die every year from the flu. Much of this work has been through Families Fighting Flu, a non-profit advocacy organization we played a small role in getting started, and some of it has been on our own through state and regional efforts in Texas.
The year 2015 will mark a decade that my wife and I have been working to reduce (eliminate, really) the number of childhood deaths attributed to influenza. Ten years without Emily in our lives. Ten years working to make sure that what happened to us doesn’t happen to other parents. There have been successes (universal vaccine recommendations) and failures along the way (people still aren’t taking advantage of vaccinations that are widely available). Recently, I’ve been reflecting on what I have learned over that time and thought I would share a few insights.
There is a vast system of public health workers in the U.S. at the state and federal levels.
They work tirelessly to educate and vaccinate people to keep them well. They don’t receive nearly enough credit.
People are often scared of things they shouldn’t be and not scared of things they should be.
Unfortunately, “the flu” falls into the category of things that people should be scared of, but aren’t. Ebola is scary. Cancer is scary. Mythical zombie viruses are scary. But, to so many people, flu is not scary.
Influenza and other vaccine-preventable diseases are a societal problem, not just an individual problem.
When it comes to vaccine-preventable diseases, your choices don’t just affect you. When certain individuals choose to leave themselves open to vaccine-preventable diseases, they can become conduits for some diseases to re-enter, re-infect, spread to even kill. You can’t drive without insurance or make up your own traffic rules. I could give dozens of additional examples. However, we allow people to choose whether or not they will be conduits for certain diseases, because vaccination is optional. As a society we struggle with this because we celebrate personal freedom and rugged individualism.
Flu vaccinations should be renamed.
To most people “vaccination” means “one shot as a child and I never get that disease, ever.” But, flu vaccine is really more of a preventative medication. You have to get a vaccine each year that is tailored to the flu strains that are expected to circulate. A flu shot doesn’t absolutely guarantee that you won’t contract influenza. You might, for example, be infected by a virus that is not covered in that year’s shot.
I believe the word “vaccination” creates false expectations that people don’t generally apply to hundreds of other preventative medications. For example, people take medications like statins to lower their cholesterol and their chances of a heart attack. Heart attacks are not always fatal, but they can be. Likewise, influenza vaccinations and medications reduce the chances of contracting influenza. Influenza is not always fatal, but can be. One of the most widespread and erroneous arguments against getting a flu vaccination is that it doesn’t work 100% of the time, so it is not worth it. But people don’t typically think this way about other preventative medications (I know I don’t).
Guilt and regret are hidden forces behind a lot of the good that is done in the world.
It hasn’t gotten easier for my wife and me to share our story, or our failure as parents to adequately protect our daughter from influenza. To publicly bare yourself – to share your mistake and your shame – is difficult. It’s depressing to see children dying each year from influenza and knowing the vast majority of them were not vaccinated. Guilt and regret are constant companions, but can at times serve as motivators to keep working…to keep sharing. As it is true for us, I suspect it is true for others, that many great charitable endeavors are rooted in guilt and regret.
Families Fighting Flu (FFF) is a volunteer-based non-profit advocacy organization made up of families whose children have suffered serious medical complications or died from influenza, as well as other advocates and health care practitioners committed to flu prevention. The families and friends of these children have been left shocked and devastated, but together they find comfort in educating people about the seriousness of influenza and the fact that vaccination can reduce the number of childhood hospitalizations and deaths caused by the flu each year.
To support Families Fighting Flu, please visit their website, follow them on Facebook and Twitter (@FamFIghtFlu) and make a pledge to get yourself and your family vaccinated each year.