Parents

Her son died of a vaccine-preventable disease; here's what one mom wants you to know

Courtesy of the Anderson family
Linda with son Gabriel, now 8.

When my son Gabriel was very little, he would beg, cry and even hyperventilate when faced with getting a shot. Like many kids, he has an aversion to needles and would be upset for days if he knew he was going to the doctor.

When he was a toddler, we spoke in simple terms about why the vaccines are important: they would keep him from getting sick. When he was a little older, he understood that they protected against bad diseases. Now 8, he knows our family’s most painful truth: his brother died of a disease that is now vaccine preventable.

Our first son, the bright, joyful little boy who made me a mother, was 7 months and 4 days old when he died from Neisseria meningitidis, a bacterial meningitis so swift and deadly it killed him less than 12 hours after his first symptom.

Phoenix was fully up to date on his vaccinations, but back in 2005, there wasn’t a vaccine available in the U.S. to protect against Strain B, which is what killed him. It is the strain that most commonly affects babies, our pediatrician told us. In the past few years, it has made news because of deadly outbreaks on college campuses.

For months after Phoenix died, whenever I’d sleep, I’d dream that I was trying to save him again. Night after night, I ran through different scenarios trying desperately to make things add up to a different outcome — what Joan Didion called “magical thinking” after her husband died.

I drove myself crazy trying to piece together the puzzle to identify when and where my boy had been exposed. I was searching for the moment that changed everything.

I never found it. If I had it to do all over again, I still wouldn’t know how to save him.

I desperately hoped a vaccine would be developed that could protect children like Phoenix. I hoped it would happen in my lifetime so I could see it.

It did.

A few months ago, the FDA approved a vaccine to be used in the U.S. One had been available in Europe and Canada before, but never in the U.S. While it’s recommended for kids age 10 and up, older than Phoenix was, I believe that at some point, it’ll be approved for use in infants.

On the day I heard about the FDA’s decision, I could barely function. I was profoundly grateful for all the lives it would save, but alongside that was the knowledge it had been too late for Phoenix. In the grand history of time, it felt like a cruel near miss.

As I read about the measles outbreak spreading across the nation now, I can’t help but think that we’ve simply forgotten. We don’t see these diseases anymore; they don’t seem real. I know that the parents who choose not to vaccinate their children truly believe they are doing what is best for them. They love their children as much as I do.

But what I want them to know is that I would give anything — I would trade all the rest of my life to go back in time for the chance to give Phoenix the vaccine that would have saved his life. It is real for my husband and me in a way that I never want anyone else to have to know.

We want to believe we are invincible and that nothing can touch our children. We have access to the best medical care. Many of the deadly diseases that swept through communities have now been eradicated due to vaccination. We don’t see them anymore, the way our parents and grandparents once did. We have forgotten — until now, when Disneyland is ground zero for a rapidly spreading outbreak of measles traced to unvaccinated Disneyland visitors. Or until you run into someone like me, whose child died of a disease that is now vaccine preventable.

To vaccinate your child means to admit the possible — that the bogeyman is real and diseases exist that can snatch your child away. That in itself sometimes may feel too scary to look at.

Each year around Mother’s Day I go to the historic cemetery where Phoenix is buried to wash and weed his grave. Then I go to an older part of the cemetery where children were buried so long ago that their families are no longer alive to tend their graves. I hope that someday, years from now, when I am gone, maybe another mom will do that for Phoenix.

There are dozens and dozens of small graves, some marked with lambs, others with tiny crosses, many bearing the date 1918 or 1919, when the flu epidemic was sweeping the world. There are so many that if I spent days there, I probably could not get to all of them.

A few years ago, I washed a grave that must have been elegant when it was new. It is made of white marble and looks like it was once the statue of a child before decades of wind, rain and snow took a toll. The base of it was overgrown with lichen so I set about scrubbing it clean. As I did, the inscription emerged: “…all the light and all the joy, we buried with our darling boy.”

Our grief when our children die is the same now as it was back then. We just don’t see it as much as we used to because, largely due to vaccination and other medical advances, children don’t die at the rates they used to.

But I can only imagine how those parents nearly a century ago would have marveled to know that now we have a flu shot. And, like me, what they would have given for the chance to get it for their child, even on years like this one where it’s only partially effective.

The truth is that as much as we wish otherwise, we can’t always fully protect our children. Lightning sometimes still strikes in ways that don’t make sense. But we can give our children all of the chances that we possibly can. And we can make promises to them that we desperately hope will come true.

After each vaccine Gabriel gets, he wants me to reassure him that the sting of the shot is worth it because he won’t ever get that disease. He wants to make sure that the people he loves have had those vaccines too. He knows what that kind of loss looks like up close.

There is a lot of anger and animosity right now around the issue of vaccination. But for me, what it really comes down to is the memory of a beautiful, sparkly little boy who was all love.

In a few years, Gabriel will be old enough to get the vaccine for Neisseria meningitidis strain B. And then I will tell him, as I do after all his other vaccinations, “You are safe.”

It’s the best I can do.

Linda Annette Dahlstrom Anderson is a writer and editor at Fred Hutchinson Cancer Research Center. She lives in Seattle with her husband, Mike and her son, Gabriel. Follow her on Twitter: @Linda_Dahlstrom

This article was originally published Feb. 12, 2015 at 4:17 p.m. ET.

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