Fear Made Me A Vaccine-Hesitant Parent. Here’s How That Changed.

Science saved my daughter's life. Then another fear took hold.
aire images via Getty Images

My daughter, Rory, was fully vaccinated on schedule from birth to first grade. When she was a toddler, our insurance didn’t cover immunizations, so I dutifully took Rory to the local health department for her shots. I would hug her wriggling body tightly as nurses zeroed in on her chubby thighs, the needle’s quick pinch causing Rory to cry.

As the nurses put cartoon character bandages on each of her legs, I would tear up, too. I hated to see her in pain — even momentarily — but I never hesitated when it was time for her vaccines. That changed when she was 6 years old.

One morning, Rory woke up and told me her new gym shoes, the ones she’d been wearing all week, felt “weird.” We were already late for school, so I tried everything I could think of to get her into the shoes — cajoling, bribing and finally using a stern voice and her full name. Nothing worked. I hauled a pair of shoes she had outgrown from the back of her closet, and Rory crammed them on her feet. She wore those until they, too, felt, “funny.”

Soon these sensory issues were accompanied by insomnia and a change in personality. My sweet little girl became defiant and aggressive. Rory began having conversations with herself or perhaps, because she was also hallucinating, she was talking to someone she thought was there. Her speech made little sense to those who were actually around her, and it eventually became like a tossed salad of words that didn’t belong together.

For a time, Rory listed like a swamped ship when she walked, eventually moving less until she sat mute and catatonic, her body writhing involuntarily. Her dilated pupils, like dark puddles, obscured her lovely hazel eyes, and she stared vacantly into the distance as if she were trying to see something far away. It was a frightening, exhausting, confusing time, made worse because doctors didn’t know what was wrong or how to help Rory.

We spent three years desperate for a diagnosis, and she finally received one: autoimmune encephalitis, a recently discovered disease where the immune system mistakenly attacks healthy brain cells and leads to neurologic and psychiatric symptoms. Untreated, AE can cause permanent disability or death. No one knows for certain what causes this disease, though the prevailing theory is that a virus triggers an inappropriate immune response.

Over the next four years, a team of doctors at Duke Children’s Hospital in Durham, North Carolina, essentially rebooted Rory’s immune system. They gave her steroids to reduce the inflammation in her brain. She took an immune-suppressing medication, frequently used by transplant patients to prevent organ rejection, to stop her immune system from producing auto antibodies. Intravenous immunoglobulin, a breathtakingly expensive medication made from the plasma of thousands of donors, provided Rory with a monthly infusion of healthy antibodies.

Gradually, she began to get better.

Any time Rory had a cold, someone in her class went home with strep throat or the child seated next to her was sent to school with a stomach bug, I held my breath. Would this be the thing that sent her immune system spiraling out of control again? Without knowing what had caused the autoimmune encephalitis in the first place, there was no way to know what might cause it to happen again.

As Rory’s health improved, another worry began to take hold for me — vaccines. By design, they activate the immune system just enough to make antibodies. They had been contraindicated during Rory’s treatment due to her suppressed immune system and immunoglobulin infusions, so she relied on the protection of herd immunity to stay healthy. However, once she was off the medications, her doctors gave the green light to resume immunizations. The thought of intentionally revving up Rory’s immune system filled me with dread. That fall, I didn’t take her for a flu shot, and I didn’t call her pediatrician to schedule her missing immunizations either.

At her yearly checkup, Rory’s pediatrician noted she was missing two vaccines: a Tdap for tetanus, diphtheria and pertussis and and meningococcal for meningitis. I admitted to being scared to do anything that might activate Rory’s immune system. The doctor, who had seen Rory at her sickest and now saw her completely recovered, could have lectured me on the importance of vaccines — something I already knew, believed and had benefited from.

Instead, she told me she understood. She posited the immune system activation would be much smaller with the vaccine than the uncontrollable cascade that would happen with the disease. Then she suggested we could start with Tdap, which Rory had tolerated when she was an infant and toddler.

My stomach churned as the needle sank into Rory’s arm. Over the next 24 hours, my nervous attempts to casually assess her condition were met with teenage-appropriate eye rolls. As expected, she developed a sore arm. Otherwise she was fine. It was the same when she later received the meningitis vaccine. This past fall, as COVID-19 ramped up and a vaccine wasn’t yet available, I did one of the things within my control to keep Rory healthy. I made sure she got her flu shot in October.

Now that a COVID-19 vaccine is available, a reported 25% of parents surveyed said when eligible their children won’t receive it, and 36% of parents surveyed said they’d wait to vaccinate, according to a preprint by The COVID States Project.

To reach herd immunity, around 80% of the population needs to be vaccinated, and to minimize community spread, which will allow the continued lifting of restrictions, that number is closer to 70%. Kids are key to reaching these benchmarks.

While it’s disheartening so many parents say they won’t vaccinate their children or will wait, I understand it. Fear is powerful. I’m hopeful, though, these parents will have a pediatrician like ours, who acknowledged my uncertainty, empathized with me and guided me through my fear.

The Food and Drug Administration approved Pfizer’s vaccine for 12- to 15-year-olds Monday with the Centers for Disease Control and Prevention issuing guidance this week. When that happens, I will sign up Rory immediately. I’ll do it because I want her to stay healthy. I’ll do it because I want our lives to resume. And I’ll do it because it’s our turn to protect others.

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