A Parent's Story of Vaccine Reaction

Among the vocal anti-vaccine arm of the autism community, a very common story is that of a parent who brings their child to the pediatrician’s office for their routine shot, and then, BAM!, like a bolt of lightning, the light goes out of their child’s eyes and they regress into autism. Right then and there, the parent decides that no vaccine needle will ever touch their precious, “broken” child, nor indeed any of their children, ever again. Not only that, but they may be so affected by the experience that they encourage other parents to forgo immunizations for any child. At least, that’s how the story goes. More often, the timeline is more gradual, and the emergence of an anti-vaccine perspective slower, building as they read more and more material which plays on their fears and appears to confirm what they suspect: that each and every vaccine on the recommended schedule is nothing but a ticking time bomb waiting to steal children from their parents.

Well, this got me to thinking about those parents whose children had experienced an adverse event following a vaccine. What about those parents who, like many of those on the anti-vaccine side of things, have gone through similar emotions and fears, yet came out following science and reason and chose to continue to support vaccination as a means of protecting both individuals and society. They are not nearly as vocal, so their stories are seldom heard. Certainly, there must be some out there who were willing to tell their tales. Putting out the word that I was looking for these accounts, I received an email from one individual, who had been thinking about telling her story for some time. After careful thought and consideration, she agreed to let her narrative appear on Harpocrates Speaks. Without further ado, here is her story, in her words:

I’m an older mom. Old enough that I’ve got one of those funny round marks on my shoulder from the smallpox vaccine. My husband is a little bit younger, and he doesn’t have one. I have two children, born just over two years apart: an older girl and a younger boy. We live in Southern California.

I am also a PhD chemist. Although it’s not my current career path, I have formerly been employed in pharmaceutical research: drug discovery for both a big corporation and for a small biotech startup, but never involved in vaccine development.

At my daughter’s 4-year physical, her pediatrician and I discussed which vaccines were due. Since at the time the schedule recommended by the AAP called for MMR, Varicella, DTaP and Polio to be given as 4 separate injections between 4 and 5 years old, we decided to go with MMR and Polio right away and DTaP and Varicella the following year.

One year later, at the end of my daughter’s 5-year physical, she underwent a capillary blood draw (I’ve forgotten what it was for; it might have been lead exposure), followed by the DTaP and Varicella vaccines, all done by the nurse after we were done talking to the pediatrician and had been given the Vaccine Information Sheets.

Standard operating procedure for preschooler’s vaccines at the pediatrician’s office in those days was that the child sits on the parent’s lap on the exam bench during the injections. My toddler son was playing with the exam room truck on the floor at the time. Immediately after the injections, as the nurse was returning the syringes to her little tray, my daughter, still sitting on my lap, thrashed – her arm narrowly missing my head — then her eyes rolled back and she became unconscious. I managed to lay her down on the bench without dropping her, and the nurse brought the pediatrician back into the room. A few moments later, my daughter came to, finding both her doctor and her mom hovering over her (I asked her if she knew who was president; I should have been asking who was her favorite Disney Princess).

We followed up with an EEG which was normal.

The Vaccine Information Sheets (I have kept at least one copy for each vaccine my children have received; they’re also available online) lists the risk of seizures following DTaP as 1 in 14,000. Did my daughter suffer a seizure as a reaction to DTaP? It’s hard to say for sure. Was it really a seizure? The pediatrician was out of the room and the nurse had her back turned when it happened, so neither can make that call one way or another. There’s no question that she became unconscious. Did the DTaP actually cause it? Or perhaps the Varicella vaccine, or the capillary blood draw a few minutes earlier, or was it a totally random event? All I know for sure is the timeline (pretty much right after the injections), and that she’d never had that happen before and it hasn’t happened since. So far, the only vaccines my daughter has had since her reaction are flu vaccines - one injected and one inhaled. Nothing out of the ordinary happened.

I spent some time poking around looking for information to help me understand what had happened. I read what I could from the public library and any articles I could access for free online (out of the industry, I no longer had easy access to full journal articles). As my son’s 4-year pediatric appointment approached, I began looking harder, since I knew he was due for that same set of vaccines: Polio, MMR, Varicella and DTaP. I needed to determine whether or not DTaP was safe for my son in light of what happened with his sister.

This is where literature searching failed me. I never found “the one” magical study that would have laid my fears to rest. I found a lot of information, little of it useful. Most studies deal with infants up to 24 months, not 4 or 5 year olds. Family histories have been studied in the context of febrile seizures, but not (as far as I could tell with access only to the abstracts) the kind my child suffered. I wish someone would publish a follow-up on families who have suffered vaccine reactions. I’d like to know if there is a genetic component to adverse events, or if it’s just random chance. Or (more likely) which ones are column A and which are column B. But I’m not even sure whom to contact to suggest such a study.

In the end, this is what I was confronted with: my daughter had apparently had a bad reaction to either the DTaP or Varicella vaccine. When I had to decide whether or not to vaccinate my son, there had been over 400 cases of pertussis reported for the state of California for the year. The final number for 2010 totaled 1124 cases, the most in half a century. There were cases reported in our local schools—not the ones my children attend, but in those whose students attend the same activities (i.e., gymnastics classes, Little League, swimming lessons) at the same places as my kids.

How do I make this decision? Risk seizure, or risk pertussis?

The bottom line: I would never have forgiven myself had my son suffered through the “hundred day cough” of pertussis because I was afraid of the vaccine.

I make sure my son holds my hand crossing parking lots because he’s still too little to be seen through a rear view mirror: I protect him from getting run over. How could I not protect him from disease, if I have the chance to protect him?

I’m still not sure what we’ll do when my daughter needs her next booster for tetanus and pertussis. It’s still quite a few years off (eight years, if we go by tetanus numbers). When the time comes, we’ll look at the risks—both for vaccine, specifically for her history, and the risks of encountering the disease. And no matter what we decide to then, I’ll make sure she understands how to assess her own risk—without scaremongering in either direction.

As for my son: how did he react to his 4-year-old vaccines, including DTap? The only reaction he had was that within hours, he complained his leg (the injection site) hurt and kept asking me to carry him around for the rest of the day. And since I’ve had my fair share of tetanus shots, and I’m a bit of a sucker when it comes to my kids, I did.

Looking back, I'd probably go through the same course of action. And I will have to do it all over again when my daughter is due for her next DTaP booster (although by the time it's due it may be TDaP). I'd just like to reiterate that I agree that more research is needed. But it's not the research that the most vocal people are crying out for. What's needed is a retrospective study follow up of cases in the VSD.

Though I have never personally been in this situation with a child, I can understand the fear and uncertainty involved. Not knowing leaves one feeling vulnerable. We want to be able to keep things in control, and when something like this happens, there is often nothing we can do other than mitigate the fallout and do our best to understand. When we are in that moment, when our fears are intensified, the lure of easy answers looms large. Something that lets us feel that we are again in control, that we know the answer, even if that something is false, is very appealing, and once we latch on, we gather those bits that support it, that add to that feeling of control, and ignore anything that disabuses us of our false sense of security.

Going through that, yet avoiding the siren call of false empowerment and pat reassurances, is difficult. My sincere thanks to my reader for sharing her story and for showing that, while bad things can happen, it doesn’t mean that vaccines are irredeemably bad or that you should eschew immunization. Rather, it calls for a rational, reasoned response. When the time comes for the next shot, they will discuss it with their doctor and try to figure out the best course of action based on what is known, and that may lead to actually opting for the shot. There are parents out there who have been through the rare adverse event following a vaccination, yet who still support vaccines as the public health boon that they are. They realize that, while there is still more to learn and always room to improve, the risks presented by vaccines are far outweighed by the risks from the diseases they prevent.