Defending a parent’s right to withhold vaccines when they want to

This column will disappoint many people I love.

On one side, I have dear friends and colleagues who regard mandatory vaccination laws as a no-brainer. If someone supports the required use of car seats or seat belts, how could one not support mandating inoculations that have protected and saved hundreds of millions of lives? These individuals strongly believe that all children deserve to be protected from terrifying scourges like polio, even if parents view vaccinations as rogue “science” or the plotting of conspiratorial governments. Some regard parents who don’t vaccinate as child abusers.

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On the other side, I have dear friends and colleagues who take copious notes while watching films like Vaxxed or The Truth About Vaccines. They regard vaccine medicine as an evolving science mixed with many motives: some dubious and self-serving. These individuals may vaccinate selectively, choosing which vaccines make the most sense for their family’s particular circumstances. A very small minority regard vaccination writ largely as more harmful than good; they eschew all vaccines completely.

I stand in the middle – the uncomfortable middle.

I’m condemned as “anti-vaccine” by those who support mandatory laws removing vaccine exemptions, minus those that are medical. Those who believe I fail to understand the ugly truth about the vaccine industry dismiss my work as “pro-vaccine.”

Stalwart believers on either side are firmly convinced of their own position. Those who reside within the echo chamber of bias confirmation may not take the time to read this article before jumping straight to the comment section, either here or via social media posts. Such ardent ideologues usually write me, too. Upon the publication of this piece, I’ll open my inbox to find my intellect denigrated due to my pro-vaccine/pro-medical choice position on this contentious parenting topic that powerfully intersects with legitimate public health concerns.

But this is my position, nonetheless. And those of us who accept the evidence that vaccine science does far more good than harm – while at the same time safeguarding informed parental consent – deserve a place at the table.

All who are pro-vaccine support the existence of medical exemptions, because some children cannot be safely vaccinated. But not all who are pro-vaccine support mandatory vaccination laws that remove religious or philosophical exemptions. Award-winning pediatrician Dr. Paul Thomas, co-author of The Vaccine-Friendly Plan and father of 10 vaccinated children, argues: “It’s up to the parents — not the government or any doctor — to ultimately decide what will work best for their children.” Thomas provides medical care to more than 13,000 children in his Portland, Oregon-based pediatric practice. He believes parents must be provided with the opportunity to give “true informed consent.”

And those of us who accept the evidence that vaccine science does far more good than harm – while at the same time safeguarding informed parental consent -- deserve a place at the table."

Thomas’ book, co-authored with Jennifer Margulis, Ph.D., has struck a chord. Since its release August 2016, The Vaccine-Friendly Plan has been a frequent bestseller on Amazon. Random House, which owns Ballantine (the book’s publisher), just ordered a reprint of 10,000 copies. Thomas and Margulis advocate for a measured and evidence-based approach to childhood vaccinations, comparable to vaccination schedules present in Scandinavian countries. They challenge certain aspects of the current Centers for Disease Control and Prevention schedule. Assistant professor of neurology at Harvard Medical School, Dr. Martha Herbert, Ph.D, refers to their book as: “A valuable, science-supported guide to optimizing your child’s health.”

Thomas and Margulis are not anti-vaccine, by any stretch, and they clearly stand for safeguarding medical freedom. Thomas states: “With vaccinations, like with every other pharmaceutical intervention, one other option we must always give patients is to opt out of the treatment. Parents know their family history and unique circumstances that government officials are not taking into consideration and that may make vaccination more risky.”

I agree. My position is forged both by study and experience. Consider these two contrasting personal experiences.

Two clinics

“Are you a new patient?” the intake nurse asks. It is our first appointment at our pediatrician’s office. The décor is bright enough and the reviews on HealthGrades were overall positive.

“Yes,” I answer through the desk window.

“Is this your first visit?” she continues.

“Yes.”

I shift my then 13-month-old son into a more comfortable position in his carrier as I answer more questions. I fill out a variety of forms. Then, it hits me – I should ask about vaccines.

“What is your office policy with regard to parental choice and vaccination schedules?” I inquire. 

“I’m pro-vaccine. Yet, I want to space some of them out. I want to go more slowly than the CDC guidelines stipulate.”

“Nope,” she replies curtly. “We strictly follow the CDC guidelines. If you want to space out vaccines, this isn’t the office for you. You can’t be one of our patients.”

“You don’t support a parent’s informed right to choose?” I ask.

“No,” she answers. “We don’t.”

Her brow furrows. I can tell she doesn’t think highly of me. For a moment, I see myself through her eyes: a baby-wearing, self-educated, thinks-she-knows-better-than-the-doctor, breastfeeding mom. Alas.

I consider the time I’ve put into setting up the appointment and the time spent playing with my son in the waiting room. I should have asked about vaccines on the phone because their approach is a dealbreaker for me, too.

“Well,” I reply as kindly as I can. “I hope you change your policy and affirm one of the central tenets of medical ethics, which is informed choice. On our side, we’ll find another practice.”

And we did.

Fast-forward three years, a change in provider, and a bunch of judiciously chosen vaccines. 

Now, it’s time for my son to enter his first, formal pre-school. He is 4-and-a-half. We homeschool overall, but that doesn’t preclude the option of enrolling him part-time in a program we admire. As part of his required school forms, my son needs a medical exam. He also needs a form stating that he is fully up-to-date on his vaccines or has an exemption from this stipulation. This exemption can be medical or religious.

The medical exam goes well. My son is very healthy, gratefully. We are nearly up-to-date on all of our vaccines. 

“You are 95 percent there,” a nurse concludes after going over our forms. But I’ll need an exemption, for I don’t plan to play a quick “catch up” and inoculate my son only to meet the preschool’s enrollment deadline. I also want to read more about the chicken pox vaccine, in particular. I’m interested in knowing why not all developed countries recommend this vaccine. I want to read more research on an associated increased risk of shingles that present in the teen years. Again, I favor a measured, deliberate approach.

“That’s fine,” our doctor says. “You don’t qualify for a medical exemption, but talk with the nurse about getting a religious one.”

I really like our current pediatrician. He’s thoughtful, wise, and kind. He draws upon nearly three decades of experience. He supports a mother and child’s journey in breastfeeding, even into the early childhood years – which, despite its health benefits, isn’t something all pediatricians do. He also supports the right of parents to be informed, educated, and make the final call with regard to their children’s vaccination schedule. In short, we found a good medical match.

On our way out, the nurse approaches me. 

“You’re the mother who needs information on getting a religious exemption, correct?”

“Yes,” I reply.

“I’d like to talk with you,” she states.

“Sure.”

The nurse steps out of the office and sits by my side in the waiting room. “Listen,” she says. “Everyone in this office knows my story and I want to tell it to you.”

“OK,” I reply. I’m listening, curious.

“At the age of 12 months, my son had a very serious reaction to the MMR vaccine,” she states. “It was so serious that he had an immediate regression developmentally. He stopped making most sounds and suddenly couldn’t even roll over on his own. It was shocking, scary, and a life-changing experience.”

I watch her face as she speaks. The emotions are strong. Her sorrow is deep.

“I’ve given thousands of babies vaccines,” she continues. “And anyone who reads the label inserts knows that these substances are not without risk. But the risk is very small. I never imagined any child I inoculated would be harmed. I only saw my actions as helpful.”

I nod.

“But my son was harmed, badly. It was an undeniable reaction. My son was harmed on my watch and I’m a pediatric nurse. He was harmed by a medical practice I had never questioned and this changed me. It changed our office, too. Now we all approach the topic with added nuance and depth,” she explains.

Again, I nod my head and then I look up at her. “I’m sorry to hear about your son,” I state. “How is he now?”

“Well, it’s been six years. Only now is he slowly catching up with his peers.”

I look at her. I admire her candor.

“We still support vaccines,” she continues. “But now we emphasize that there is a small, but real risk. And we are interested in practices that minimize this risk. We always support a parent’s right to space out vaccines or opt out entirely.”

“Thank you,” I reply. I am grateful for her willingness to share her story. The contrast with the attitude of the nurse in the previous practice couldn’t be more striking.

“It’s the least I can do, given the suffering my family has known,” she states, her voice filling with emotion.

By the end of the week, our preschool adds the religious exemption form to my son’s file.

Not like a seatbelt

"I get that all the time. To the extremes on the pro-vax side, I'm anti-vaccine because I support choice. To those extremes on the anti-vax side, I'm ardently pro-vaccine. You'll NEVER win.”

~ Tracy Cassels, Ph.D., founder of Evolutionary Parenting

Upon reading the above story contrasting two very different pediatric offices, consider your response.

Would you prefer medical professionals keep a distance or share their personal stories regarding child vaccines? Would you want to be in a practice that strictly follows the CDC guidelines and wouldn’t welcome you unless you did, too? What if you hailed from another developed country with a more measured and, perhaps, more evidence-based approach to vaccinations? Which standard of practice would empower you as a parent? Which approach to vaccination best safeguards your child’s well-being?

I felt belittled and disregarded in the first office. The nurse sitting at a desk behind a window quickly dismissed me. There was no willingness in considering that perhaps my interest in judiciously and slowly vaccinating my son may be wise. They had an all-or-nothing approach with regard to CDC guidelines. In the second office, I was treated kindly and my rights as a parent to make informed medical decisions were respected. Furthermore, one of the nurses came out of the office to sit and share with me a personal story – parent-to-parent, mother-to-mother. Her story was difficult to hear, but I was grateful she shared it.

I’m not anti-vaccine. My son is vaccinated and I acknowledge vaccine science has saved hundreds of millions of lives. I even join the majority of Americans in supporting mandates for vaccines in schools. According to a Pew Research Center poll released last month, 82 percent of Americans believe schools should mandate vaccination of healthy children against Measles, Mumps, and Rubella (MMR). Clearly, a strong affirmation of the utilitarian ethic and a trust in the medical community to honestly safeguard the best interests of our children are at work here.

While I have no problem with schools establishing vaccine guidelines, I support the rights of parents to opt out of such mandates by way of religious or philosophical exemptions. I’m very concerned when parents are belittled or disregarded after raising safety concerns regarding the current CDC schedule. For example, perhaps there would be fewer adverse reactions to the MMR vaccine if it were available in three separate doses, or given to children when they are at least three years of age, as Thomas advises in his book. 

I want parents to be informed, educated, and unafraid to ask important questions. I want medical professionals in the United States to consider the possibility that there may be vaccination schedules that are healthier for our nation’s children, schedules that are more soundly rooted in evidence-based science, than our current CDC schedule. I am not alone in worrying that we are vaccinating too much, too soon. 

But what about car seats or seat belts? Would I want individuals to obtain legal exemptions with regard to the use of these life-saving devices for religious or philosophical reasons? What if a mother had a spiritual belief that precluded the use of seat belts and wanted to hold her baby and breastfeed while careening down the freeway at 75 miles per hour? Doesn’t she have that “right?"

No, she doesn’t. Rights are always twinned with responsibilities. It makes very good sense to support laws that mandate the use of child safety seats and seatbelts. But doesn’t it make the same good sense to remove religious or philosophical exemptions to our CDC vaccination schedule? Aren’t these situations nearly identical?

I'll leave it to parents to decide.