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My Daughter’s Illness Completely Changed My Perspective on Vaccines

Photograph by Twenty20

When my daughter was younger, I described myself as a “vaccine-wary mom.” I was neither pro- nor anti-vaccine. The idea of injecting anything in my daughter made me uncomfortable, but I am a woman who believes in research and all my research told me that the benefits of vaccines outweighed the risks.

Still, there were risks. No one can deny that. The CDC lists out those risks themselves. And, as a woman who lost her fertility (and required five major abdominal surgeries, resulting in around $60,000 in out-of-pocket medical expenses) because of a medical procedure and injectable medications I had been told were “completely safe,” I’ve earned my wariness.

In talking with friends in the medical field, my daughter’s pediatrician and basically anyone else who was willing to share information with me to help ease my concerns, I ultimately decided on an extended vaccination schedule. My daughter is adopted, and she comes from a small native community where vaccinations weren’t as common even a generation ago. It was fair to worry about how her system might handle vaccines and with the limited medical history I had for her, I felt better spacing them out and knowing she was getting fewer at a time.

Her pediatrician was completely on board with this plan, so together we moved forward with getting my daughter fully vaccinated, just at a slower rate than the rest of her peers.

Fast-forward four years, and my daughter was almost completely caught up with the standard vaccination schedule. With two exceptions: she still needed one more round of the MMR vaccine and one more round of the chickenpox vaccine.

No problem. We were slated to get both soon. Then, my daughter landed in the hospital.

No, she hadn’t contracted either of those diseases. Instead, she was ultimately diagnosed with an autoimmune condition: juvenile idiopathic arthritis (JIA).

Now, before any rabid anti-vaccination mamas jump in, no, her condition was not caused by vaccines. In fact, I’ve come to learn that this is a condition that likely existed (but went undiagnosed due to lack of access to medical care) several generations back in her family line. For her, this is hereditary—not vaccine-related at all.

Still, her body was legitimately attacking itself. Before diagnosis, she had stopped being able to do basic things like open her bedroom door or walk without pain up a flight of stairs. My 4-year-old could no longer run without wincing.

There are a lot of scary and involved things about this disease that I’ve had to wrap my head around. Perhaps one of the hardest has been her treatment protocol. Once a week, I give my daughter a shot of a chemo drug called Methotrexate. It’s meant to suppress her immune system.

Which means that my daughter is now one of those immunocompromised kids who needs to be protected by herd immunity. Had she been on a regular schedule, she would have been fully protected before her diagnosis. She can still receive non-live vaccinations, but live vaccinations are off the table. The two she was still waiting on are both live vaccines she can no longer get.

But I do get it now, why some moms are so passionate in their pursuit of ensuring everyone is vaccinated. Because when it’s your kid who can’t be vaccinated, it is scary.

I’ve had to grapple with my guilt over that, and with my fear as a whole new round of measles outbreaks have been reported. Again, had she been on a regular schedule, she would have been fully protected before her diagnosis. It’s something I try not to think about, because, really, how could I ever have known?

We both received our first flu shots this year. In years past, I’ve always taken the stand that a healthy immune system should be able to fight off the flu. I didn’t trust a vaccine that was different every year.

This year, the flu could literally kill my daughter. I didn’t think twice about getting it for us both as soon as it was available. I even posted a Facebook plea to friends and family who spend time with us, asking them to get it as well.

Yes, in that post I acknowledged my own hypocrisy and admitted I never before fully understood just how scary these topics could be for a parent of an immunocompromised child.

It is the height of selfishness to only understand the importance once you’re the one who’s affected. I get that. I own it. I’m not proud, but here I am—learning lessons and hoping those who love us are along for the ride.

Here’s the thing, though: If I could go back, knowing what I know now, yeah, I probably would have gotten these vaccines for my daughter sooner, but I’m not sure I would have veered completely away from that extended vaccination schedule. There's still a lot about it that makes sense to me. It’s still a schedule I might feel most comfortable with, were I to have another child.

But I do get it now, why some moms are so passionate in their pursuit of ensuring everyone is vaccinated. Because when it’s your kid who can’t be vaccinated, it is scary. And you feel a little helpless. You can’t keep your kid in a bubble, but you also realize that’s kind of what those vaccines are meant to do: provide a bubble from the diseases that are out there, lurking, capable of taking your child from you at a moment's notice.

One thing I can guarantee is that I will never neglect getting the flu shot again. Only now do I get it: It’s not about protecting me. It’s about protecting the ones whose immune systems may not be able to do the protecting for them.

It’s a lesson I had to learn the hard way—and one a part of me wishes I was still ignorant about.

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