My daughter, Rory, was fully vaccinated on schedule from birth to first grade. Our insurance didn’t cover immunizations when she was a toddler, 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 six years old.
One morning, Rory woke up and told me her new gym shoes she’d been wearing all week felt “weird.” We were already late for school, so I tried everything I could 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 personality change. My sweet little girl became defiant and aggressive. Rory began conversing with herself, or perhaps, because she was hallucinating, she was talking to someone she thought was there. Her speech made little sense to those around her, and it eventually became like a tossed salad of words that didn’t belong together.
Rory listed like a swamped ship when she walked for a time, 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. She finally received one: autoimmune encephalitis, a recently discovered disease in which the immune system mistakenly attacks healthy brain cells, leading to neurologic and psychiatric symptoms. No one knows what causes this disease, though the prevailing theory is that a virus triggers an inappropriate immune response. Untreated AE can cause permanent disability or death.
Over the next four years, a team of doctors at Duke Children’s Hospital in Durham, North Carolina, 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 autoantibodies. Intravenous immunoglobulin, a breathtakingly expensive medicine made from thousands of donors’ plasma, provided Rory with a monthly infusion of healthy antibodies.
Gradually, she began to get better.
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. Whenever 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?
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 or call her pediatrician to schedule her missing immunizations.
I admitted to being scared to do anything that might activate Rory’s immune system. Rory’s pediatrician noted that she was missing two vaccines at her yearly checkup: a Tdap for tetanus, diphtheria, and pertussis, and meningococcal for meningitis. 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 with the disease. Then she suggested we 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 met 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, 25% of parents surveyed said their children wouldn’t receive it when eligible, and 36% 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 crucial to reaching these benchmarks. While it’s disheartening that many parents say they won’t vaccinate their children or will wait, I understand. Fear is powerful. I’m hopeful these parents will have a pediatrician like ours, who acknowledges my uncertainty, empathizes with me, and guides 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. Do you have a compelling personal story you’d like to see published on HuffPost? Find out what we’re looking for here, and send us a pitch! Calling all HuffPost superfans! Sign up for membership to become a founding member and help shape HuffPost’s next chapter.
