Tara Hills Luke

Tara cuddling with her recovering 10 month old.

When I wrote our story last week, I had no idea our story would go ‘viral’ (no pun intended).  We are a private family, as most homeschooling families are, so we thought that maybe a few people in our community would see it.  We never imagined that our story would travel around the globe.  As encouraged as we are to hear about the positive impact our decision to share it has had on many others, it has also been hard handling a real medical crisis in the face of intense global media and public scrutiny. Last Tuesday, when the positive test results came in 4 days late, the waves of chaos hit us with a fury that we can’t possibly describe. Everything that day was a blur, from me editing my original post to include our diagnosis, to the reality of dealing with 7 active cases of pertussis.   My 3 youngest were hit the worst and will take longer to recover. Their coughs still turn heads when anyone hears them through the window or from our backyard. Fortunately, the avalanche of escalating symptoms (consistent with week 3-4 pertussis) has been averted with the antibiotics, so the kids are on the mend. With their 5 day course of antibiotics complete, Ottawa Public Health gave the kids the all clear to resume normal life as of Monday. And thank goodness. No one needs to tell us (though they still do) that this could have been so much worse for us…and for those whose lives ours touch.  A week later and with our recovery underway, we can process things with more clarity.

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Tara with her oldest child as an infant.

I am exhausted and emotionally raw, and I am keeping it together for my family. Every day is a little better than the one before, but I still think about this whole scenario every waking minute. I expect I will for some time. Having come through this from one ‘side’ to another, we can relate to the many real emotions of fear, anger, distrust and hurt that many have voiced against us. To those closest to us (including our kids old enough to even have this talk), we have already offered our personal apologies and received more grace than we deserve. People who know you personally tend to give you the benefit of the doubt and stick with you when you mess up royally. You know who you are. To our community, to whom our private lives are interconnected in the public sphere, we see now how our choice to not vaccinate had an emotional impact when this went public. An issue like this invokes fear, distrust, anger, and upset, and it was never our intent to create those feelings. Words may seem cheap now that the damage is done and we can’t undo it. We can only say that we are truly sorry for the unintentional but real impacts to everyone involved. We hope that sharing our personal story will be some token of reconciliation.  We took the personal risk of going public because we knew that others like us might be willing to re-evaluate the topic sooner than we did if more people used a better approach.  We understand the anger and fear.  And we know that the more we communicate constructively, the more we can work together to help people make sound decisions for their family and community. – Edited by Leslie Waghorn and Julia Bennett

Tara’s Answers to Your Questions:

Why did you wait until your kids got sick to change your mind about vaccines?

We didn’t!  As my original article stated, we had already changed our mind and had booked 3 appointments to catch up all 7 kids and the adults with our family doctor. Before we could get everyone in, whooping cough struck and people in our close circles got exposed including 2 immunocompromised adults and a 5-month-old infant.

You said there was a way for people to get people that are anti-vaccine to reconsider their position. What is that?

In my experience and observation, many people that are provaccine can vent their anger and fear by taking a mocking, angry, sometimes bullying stance with parents that have questions about vaccines. This is seen at its worse online. When the approach is like that, it feels like they’re talking down to us or questioning our fitness as parents. This approach only made me more defensive and less inclined to even consider re-examining my position. The person who significantly helped me walk through the process of re-examination talked to me like a person and didn’t make me feel stupid or a negligent parent for asking questions. Didn’t force me to vaccinate while I still had doubts. They talked to me like I was an intellectual equal and acknowledged that I just wanted to do what’s best for my kids. If more people talked to parents with questions about vaccines like that, instead of making them feel stupid or ashamed, I think more minds would be changed.

What were the questions you asked when you were reconsidering vaccination and what were the answers that put your mind at ease?

 Any fair trial has to consider both sides and weigh the evidence.  Yet, sometimes the sheer quantity of information online can be overwhelming.  How does an average person know what source to trust?  All the questions boiled down to 3 main headings based on the most popular ‘antivaxxer’ accusations against vaccination.

  1. Do we REALLY still need to vaccinate? We had been told that that vaccines take credit they aren’t due, that hygiene and happenstance had more to do with the death reduction, or the stats presented are slanted. We learned that vaccines are a victim of their own success, that while hygiene played a role in the prevalence of these diseases that hand washing alone can’t account for the dramatic reduction in cases after the vaccines were introduced.
  2. Is it REALLY safe for my kids (and me as an adult) to be vaccinated? Is there a cover up? We had been lead to believe the death and impairment from vaccines are astronomically higher than governments and media will admit, there’s all a cover up, it’s all about money and everyone is connected to dirty big pharma. We learned that there is a difference between vaccine adverse events reported and confirmed vaccine injuries.  We learned that pharma makes most of their money off of patented medications and the patents on most early childhood vaccines have either expired or never existed and are considered “generic” and that the prices for vaccines are posted publicly and their ingredients are heavily regulated.  We also learned that doctors usually lose money on vaccines but pharma makes so much more when people actually get sick with vaccine preventable disease.
  3. Can you PROVE IT? Honestly I was scared that in spite of all our searching we would still be conflicted.  That our kids health would come down to a 50/50 coin toss. After 50 personal hours looking for the smoking gun. No one was more shocked, embarrassed and downright angry than we were to find the weight of documentation rested on the pro-vaccine side. The weight of the evidence was overwhelming.

Why did you not quarantine your children between your trip to the hospital and when you received the call confirming the diagnosis?

 The triage nurses and resident physicians who assessed our 10-month-old (and witnessed 2 separate cough periods) didn’t indicate that the coughing fits were anything to be overly alarmed about, we weren’t even put in isolation.  I asked them specifically what I should do during the 48 hour interim in case results returned positive and they told me not to concern myself or do anything different.  They didn’t want me to “get ahead” of myself and change any Easter weekend plans (the next day was Good Friday).  Their parting words to me “There are a number of viruses going around right now … so I wouldn’t be too concerned or change your plans.”  So I went home with every reason to  believe in my mind that I had over reacted, this was just the tail end of a common virus, and no cause for alarm. They told us they would call by Sunday if the swabs came back positive for whooping cough, so when I didn’t hear back from them on Sunday I assumed the test was negative.  We didn’t get the call that the test was positive until Tuesday.

How long has it been since your oldest four children had any vaccines?

 We followed the Canadian Immunization Schedule for childhood vaccines with our first to our fourth and stopped after his 2 month shots.  Our oldest was 4 at the time, so they didn’t receive the complete schedule of shots.  We found out that six years later their partial immunity would have waned years earlier to almost nil, leaving them with little to no defense to the whooping cough bacteria.

Do you think your brother-in-law gave your children whooping cough during the games night?

 No.  Pertussis has a distinctive pattern of symptoms that diverge from those of the common cold after the first 2 weeks. Our brother-in-law had recovered from his cold after a week, so he was totally ruled out as the carrier, though I mention his illness as an explanation for why we weren’t more concerned with our children’s cold-like symptoms at that point.  Ottawa Public Health estimates our likely exposure time was actually the first weekend of March, 7-10 days before the onset of the first symptoms. How we got exposed remains unknown.

How has your community reacted to your blog post?

 My immediate family and friends have been been gracious and supportive. They met us where we were at and offered to help in every way they could. The wider community has been unexpectedly forgiving. Local Facebook moms groups have been honest about their feelings yet most have been willing to look past how we got there to where we were. Some have been understandably upset, even enraged. The best comment bar none was a friend posting to my wall that her family doctor wanted to send us a personal thank you for sharing our story publicly.  More people had contacted their office to update and start vaccines than ever before. What has surprised me the most are how many more civil, mature, and decent people there are in the local moms Facebook groups and comment feeds online.  After 6 years of ‘hearing’ so much shaming and intimidating comments blasted at ‘anti vaxxers’ it was so heartening to see a measurable increase of civility and diplomacy in public forums. It has been reassuring to see ‘pro-vaxxers’ calling out fellow ‘pro-vaxxers’ on bullying tactics like name calling.  Anger and fear about this issue is simmering on both ‘sides’ — but yelling abuse at each other is destructive.  I was surprised at how quickly people began making untrue accusations about me, like calling my story into question as fake pro-vax propaganda or saying that I’m being paid by big pharma.  I am still waiting for the imaginary paycheck. People who have concerns about vaccines, like we did, can be reached with the right approach.  More people are getting that and willing to handle their personal feelings in a more constructive way so the end goal is met.  That is so admirable and I heartily encourage this growing social norm!

 

Resources:
Leslie Waghorn. What’s Up With That? Peer Review. The Scientific Parent. 2.12.15.

World Health Organization. What Are Some of the Myths – and Facts – About Vaccination. Online Q&A. April 2013.

Vaccine Adverse Event Reporting System. Overview. Retrieved 4.14.15

World Intellectual Property Organization. Patent Landscape Reports Project on Vaccines for Selected Infectious Diseases. Patent Landscape Reports Project. 2012.

Centers for Disease Control and Prevention. Vaccine Price List. Vaccines for Children Program. Updated 4.1.15. Retrieved 4.14.15

U.S. Food and Drug Administration. Vaccines. Updated 11.2.10. Retrieved 4.14.15

Scott Hensley. Vaccinations Can Be Money-Losers for Doctors. NPR. October 17, 2011.

Offitt, P. Why are Pharmaceutical Companies Gradually Abandoning Vaccines? Health Affairs. May 2005. pp 622-630

Susan Jaffe. $18 for A Baby Aspirin? Hospitals Hike Costs for Everyday Drugs for Some Patients. Kaiser Health News/USA Today.  April 30, 2012.

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Categories: Infectious Disease + Vaccines, Policy, Politics, + Pop Health