Outliers

Touching on such a controversial issue, I realize that I write this at the risk of hitting some parental nerves...but I have reached a point where I am finally ready to take that risk and accept whatever consequences may follow. (My hope being that those consequences will include nothing more than respectful and compassionate exchanges of thoughts and ideas, disagreement or no.) I feel as though this is a safe place to share things like this, as in this space, I know that I am among friends.

I usually remain silent when I read vaccine-related posts and opinions (usually VERY strong opinions) on facebook, but I am finding it harder and harder to stay quiet on an issue that hits so close to home. I must also preface this by stating that I consider myself neither pro- nor anti-vax. What I am is Pro-Otis.

We have been told by two epileptologists at two nationally ranked pediatric epilepsy centers that, while not likely the cause of O's seizure disorder, his first round of vaccinations at 2 months of age (likely the DTaP) could quite possibly have been the catalyst for his infantile spasms, having triggered some underlying (yet-to-be-identified) genetic quirk that was perhaps caused by an undetected infection contracted while in utero. One of them told us outright that the DTaP vaccine can be irritating to the brain, and could be more harmful than helpful to a kiddo with uncontrolled seizures, like Otis. We were even advised by our neurologist to refrain from giving Otis additional DTaP boosters until we were able to get his seizures under control, which has not yet happened. 

The truth of the matter is, we will likely never know what role, if any, the vaccinations played in the onset of O's catastrophic seizure disorder. We do know that vaccine-triggered seizures are not an unusual scenario, and that vaccine injury does occur, probably more often than we know. On this journey of ours, we have met children whose severe refractory seizure disorders actually were caused by--and officially documented as--vaccine injury. Collateral damage, I believe those cases are quietly referred to in the medical community.

We truly do understand the public health concerns of having an unvaccinated population, yes. However, we also understand that vaccination is not so easily such a black and white issue, and that it simply cannot be a one-size-fits-all type of thing. I don't have any solutions to offer here, no alternatives to our current system of herd immunity, but I think that maybe, given some time in our shoes, individuals on the extreme pro-vax side just might be able to have some empathy for the fear parents like us experience when facing the choice of future vaccination. As the parents of a neurologically fragile child, we must constantly weigh the risks. Which do we choose--the chance of our son, unvaccinated, not being protected from one of several life-threatening illness, or the chance of a vaccine triggering further progression of life-threatening brain injury and daily life-threatening seizures? 

There is unfortunately no instruction manual for any of us to follow here. All each of us parents can hope to do is the very best we can based on our own research and experience, while practicing empathy and compassion, rather than judgement, for the choices other parents must make for their own children.This is why educating ourselves on as many sides and perspectives of the issue as we can is so, SO important, and not just for those of us raising medically fragile children.

I saved the link to the blog post I am about to share some time ago because through it, Elizabeth Aquino so accurately communicates our perspective on this issue. Also worth reading is the Addendum just below Elizabeth's post. I at first thought to just share the link on facebook, but then worried that it might catch a few "likes", spark some futile pro/anti-vax debate, then get lost. Because of that, I thought it most appropriately share here, to be documented as part of this greater truth we are sharing about our life with Otis.

Be warned that this post is fierce (it was written by a mother, after all), and it does contain some profanity:

http://elizabethaquino.blogspot.ca/2014/03/why-i-am-not-irresponsible-jerk-moron.html

You might, instead, hold my hand as the doctor slides the needle into my two-month old baby's thigh and watch with me as her mouth makes a perfect O before the scream comes out. You who have babies know that look, don't you? Keep holding my hand a few weeks later when another life begins, when my other hand injects her dimpled thigh with high-dose steroids to stop the seizures that just won't stop. Keep holding it as I walk with her screaming for hours and hours and hours, for days and weeks and years.


See also Brian Hecht's beautiful story, shared via another post on Elizabeth Aquino's wonderful blog: http://elizabethaquino.blogspot.ca/2015/01/science-is-more-than-equations-or.html