Moms Who Vax: Nicholas's Mom

Editor's Note: Nicholas' Mom is a Catholic work-at-home mom who lives in the Northeast with her husband and their six children.  

"Are any of them twins?"

And there it is again.  It's not an unreasonable question with so many children so closely spaced together, but every time it comes up I have to pause and loosen the lump in my throat, smile and say that no, none of the children standing with me are twins.  One of them, my littlest girl with the pigtails and impish grey eyes, should have been a twin though.  And she was a twin until Fall of 2009 when I caught H1N1 influenza.

We hadn't even been trying to get pregnant, so when those two pink lines showed up we felt pretty stunned.  However, my husband and I quickly wrapped our hearts around the fact that we would be welcoming our 5th child and were so excited to see him or her on ultrasound.  In the darkness of the ultrasound room at first I didn't know what I was looking at and wondered why there was something else in my uterus next to "the baby" until the tech pointed out very clearly "so, there is baby A and there is baby B."  I asked if she was sure.  I had to stop driving a few times on the way home to collect myself, muttering under my breath "one baby... and another baby.  Two babies?!?!!"  I hadn't expected to be pregnant at all and here I was, extra pregnant with a couple of stowaway twins.  I called my husband who quickly started calculating how we were going to afford a full size van.  I called my midwife, and a nurse friend who had two year old twins and started figuring out how to try to have the healthiest multiple pregnancy that I could have.  I wasn't sure how all of the logistics were going to work out, but we are a Catholic family and decided to place our trust in God and to walk by faith.  

For weeks I took belly photos, counted grams of protein, devoured any book on multiple pregnancies that I could and consulted with my doctor and my midwife about how to plan for pregnancy, birth and life with twins.  I felt amazing and was so excited about my babies. I cherished listening to baby A and baby B's heart beats, so distinct from each other, one much faster than the other.  Living in a house that would barely have accommodated one more baby, we started looking at finding a bigger home in our area and price checked on eBay to see what kind of car that would fit our family we could afford with our tax return that year.  

When the first cases of H1N1 started popping up in Mexico I barely noticed.  I thought the idea of "pandemic flu" sounded so overblown.  When my friend told me that natural immunity was better than the vaccine and there were miscarriages associated with the flu vaccine, I took what she said seriously the same way I trusted her about what size shirts I was going to be in by the end of my pregnancy.  I was afraid to get the vaccine.  Ultimately I wasn't sure whether I was more scared of the disease or of the terrible things my friend told me could happen if I got the vaccine, but I decided to trust my health care providers and signed up for the very first vaccine clinic for pregnant women in my county.  Beyond that I went about my daily life and just waited for the vaccine to become available in my area since there was such a severe shortage in our area.  I never thought that anything bad could or would happen to me.  I was in my mid 20s, ate a healthy diet with lots of vitamins, tried to lead a more natural lifestyle and I worked too hard to have a healthy pregnancy for anything to possibly go wrong.  I worried about how I might get pneumonia if I caught H1N1, but beyond that it never occurred to me that my babies could be at risk.

I was the first in my family to show symptoms.  At first I felt slightly off and then I spiked a fever that evening. Through the night I slept fitfully, slipping in and out of hallucinations and for the first time in my life truly afraid that something worse could happen to me from a virus than just being miserable for a few days or weeks.  My doctor saw me first thing in the morning while my husband and then our kids started showing symptoms, and immediately prescribed Tamiflu.  I realized how serious my condition was when my doctor gave me the "if you start turning blue, don't try to get to the hospital.  Call 911 immediately" discussion.  Within even a few hours of getting the Tamiflu on board I started feeling not exactly better but like I wasn't getting worse.  I was still weak and took time to recover fully, but I was certain that the worst of it was over.

But what bothered me in the weeks that followed was that I only heard one range of heart tones.  Before there had been two, even as recently as the day before I was sick.  They were still in two different places and I measured ahead enough that my midwife had no concerns, but I couldn't shake the feeling that something was off.  I put it down to being the normal jitters of a mother who had had previous pregnancy losses and trusted that everything was ok even if it didn't feel ok.  After all, the worst was over, so I waited for my 18 week ultrasound to find out whether my babies were boys, girls or one of each.  We brought all of our kids with us to see the babies on ultrasound, the day after Thanksgiving that year.  It was clear as soon as the tech's face changed from excitement to concern that something was very wrong.  She kept looking but finally had to tell us "right now I'm only seeing one baby."   With those words my heart sank through the floor.  I had children in the waiting room waiting excitedly to find out whether they were having brothers or sisters.  I had no idea how I was going to tell them what had happened.  The radiologist came immediately and confirmed what the technician had found and life would never be the same again.

Through so many phone calls to be made, emails, Facebook updates I felt numb and wondered what I had done wrong.   I took all of my vitamins, I was healthy and working so hard for a healthy pregnancy.  As much as I looked for things I should have done differently or better, I kept coming to the bewildering conclusion that there was nothing.  I had done everything right and my baby, my daughter's twin, still died anyways.  There was no rhyme or reason.  There was no missing piece of the puzzle that if I had just done that one missing thing, everything would have been ok.   The only thing that would have made a difference was the vaccine, and no amount of wishing was going to change the fact that there was a shortage and that I got exposed during that delay.  I am so thankful to still have my daughter, that she was able to survive, but loving her doesn't change the knowledge there is someone who isn't here who should have been.  

No one looks at my family and sees that empty space where the lost child we named Nicholas should be.  No outside observer sees the missing fingerpaintings, hears the missing voice in the crowd, or notices the muddy footprints that aren't left alongside his brothers and sisters.  But I see them.  I see them in my daughter's eyes and wonder whether Nicholas' would have been blue, brown or grey like hers are.  I see them at Thanksgiving when my beautiful little girl sits so proudly at the table and I know exactly how old Nicholas should be this year.  These are the invisible losses, these are the hidden pains that I will always carry because of what H1N1 did in my life.  And I will spend the rest of my life wondering what would have happened if I had been able to get the flu vaccine.

The question still comes up every so often even now that we have our 6th child:  are of my children twins?  No, and yet yes.  My daughter will never know her twin and I will never have that baby, that precious child in my arms.  But I carry him in my heart and in my life just the same.  I remember him with every vaccine that my children get as soon as they are eligible to receive it.  I remember him with every stranger or friend I help to research vaccines so that they can feel comfortable in the safety of immunizing their children.  I remember him with every step of immunization advocacy that I take, every time I share his brief life with others.  This is his legacy.  This is his life, and how I honor it by remaining Nicholas' mom.

Editor's note: Flu vaccine is strongly recommended for all pregnant women. It is safe for both mom and baby, and will provide the newborn added immunity through its first few months of life.

Compromising Children's Health and Safety...

Received news this morning regarding the interesting legislation working its way through the Vermont State Legislature over the last week or so that I wanted to pass on. As many of you know, Vermont is currently trying to remove its philosophical or "conscientious" objection opt-out in vaccine law, in order to better protect children. And, as expected, the anti-vax community is fighting tooth and nail to make sure they can continue to refuse to vaccinate their children AND send them to school with no obstacles or challenges. They don't seem to care that this happens when unvaccinated children contract the diseases they could have been vaccinated against, and pass those diseases on to other people.

Today we learned from PKids that   “a compromise on S.199 has been introduced by the Senate Health & Welfare committee.  The proposal would require a conversation between a parent and their child’s Primary Care Provider which included a discussion of the risks and benefits of refusing a vaccination. After this discussion and after sign off by the provider the exemption would be accepted. The process could be incorporated into routine well-child visits before school entry or during the provisional entry period. The proposed legislative language and a sample of a draft exemption form is attached.  The original bill can be found at http://www.leg.state.vt.us/docs/2012/bills/Intro/S-199.pdf."


The committee is voting next Tuesday--Valentine's Day--on the compromise, as well as the original bill. As parents who love our children, and the children of parents who choose not to vaccinate them, we really need to get on the horn, or the keyboard, and get in touch with these Senators and ask them to pass S.199 as written. I'm not willing to compromise on the health of my kids. I doubt any of us are. 


If you are from Vermont or know anyone in Vermont--he or she does not even have to be a parent--please ask them to contact their legislators at the e-mail address or phone numbers below. Some talking points include the following:

·       This “compromise” does nothing to improve the protection of our vulnerable children in public daycare and school. 

·       This only formalizes and gives credence to philosophical objection to vaccines making it more ‘official’ that we are slipping backwards on this issue.

·       Why would Vermont adopt the plan of a state (Washington) that is one of three states with the poorest of immunization rates? While their recent legislation hasn’t been around long enough to be evaluated thoroughly, viewed reasonably, it is not likely to have a significant impact on immunization rates.

·       Children are not political decisions, please do not allow children to be opted out of a lifetime of health and happiness.

Senate Health and Welfare

Sen. Claire Ayer, Chair, 504 Thompson Hill Rd., Weybridge, VT 05753
(802) 545-2142 -cayer@leg.state.vt.us

Sen. Kevin Mullin, Vice Chair, 118 Ox Yoke Dr., Rutland, VT 05701
(802) 775-7631 - kjmbjm@aol.com

Sen. Anthony Pollina, Clerk, 93 Story Rd., North Middlesex, VT 05682
(802) 229-5809 - apollina@leg.state.vt.us; apollina@sover.net

Sen. Sally Fox, 80 Bartlett Bay Rd., South Burlington, VT 05403
(802) 860-6428 - sfox@leg.state.vt.us; senatorsallyfox@gmail.com

Sen. Hinda Miller, 84 Deforest Heights, Burlington, VT 05401
(802) 862-7008 - hmiller@leg.state.vt.us

The Incredible Hulk Vaccine Side Effect: Or, Understanding VAERS

By Karen Ernst

Inevitably, in the course of speaking with someone who wants to support her decision not to vaccinate her child, you will be asked to read the VAERS (Vaccine Adverse Events Reporting System) database. Reading VAERS is not inherently wrong or bad. However, before reading VAERS, you should understand what it is and what you will find there.


VAERS is the place where doctors, patients, and really anyone else can report what they suspect to be side effect of a vaccination. The CDC and the FDA co-sponsor this data base, and they use it to monitor possible vaccine side effects. When certain patterns or clusters of similar reports appear, public health officials investigate these events and make appropriate recommendations. For example, in 1999, VAERS caught a higher than expected incidence of intussusception—a bowel disorder—following adminstration of RotaShield, a rotovirus vaccine.  Epidemiological studies confirmed the heightened risk of this side effect, and the vaccine was pulled from the market.


In this sense, VAERS is invaluable. It gives public health officials the information they need in order to keep our immunization program as safe as possible. As a parent, I take comfort in the fact that VAERS exists and that people who know how to analyze the data are on top of it.


However, VAERS is a passive reporting system. This means that anyone can report anything to it. There is no go-between. It’s almost like an online forum or message board; anyone can post and no one vets the claims. As such, a report in VAERS does not prove that any adverse event was actually caused by vaccines.  In fact, it doesn't even prove that any reported adverse event actually existed. One of the more well-known examples of how any report makes it into VAERS was Dr. James Laidler’s report that the influenza vaccine turned him into the Incredible Hulk. He inspired Kevin Leitch from Left Brain Right Brain to report a similar Wonder Woman adverse event. 

Of course, those examples are a bit tongue-in-cheek. There are other events people submit, however, which can be taken no more seriously.  For example, here is one reported event, taken word for word from the VAERS data base:



“Information has been received from a nurse practitioner concerning a patient’s nephew, a 17-year-old male consumer who she "thought" was vaccinated with a dose of GARDASIL (lot number not provided) in November 2010. The nurse practitioner stated that two weeks after the patient received the dose of GARDASIL, approximately November 2010 (also reported as "two weeks ago" on approximately 01-APR-2011), the patient died of sudden cardiac death on the lacrosse field. Unspecified medical treatment was given. It was unspecified if any lab diagnostic test were performed. The cause of death was sudden cardiac death. Sudden cardiac death was considered to be immediately life-threatening and disabling by the reporting nurse practitioner. Additional information has been requested.”



In this third-hand report (a nurse practitioner reporting about the nephew of a patient), VAERS cannot even confirm whether or not the deceased ever received the vaccine in question. In another very sad report, suicide (following a history of suicidal ideation) is blamed on a vaccine: “Known chronic depression, she elected to stop her medications when she turned 18. Committed suicide 04/28/11. Hung herself.”



Other similar reports are made here at the well-known anti-vaccine site National Vaccine Information Center. Included in this one page of the VAERS data base are people who read something on the internet and made a VAERS report.  Sometimes the same person made multiple, similar, vague reports. That bereaved parents and concerned others make reports to VAERS is not troublesome, even when these reports may be dubious or even fraudulent.  Epidemiologists and public health experts know how to wade through the overwhelming amount of information in order to determine the safety of our vaccines.
But the anti-vaccine movement relies heavily on the VAERS data base to frighten parents away from vaccines, and this is extremely troublesome. 

VAERS does not prove causation, or even correlation, when it comes to side effects and vaccines. Parents would be far better off trusting their doctors who have examined the studies done to ensure the safety of the vaccines we use to protect our children. As parents, it’s easy to be scared off vaccines by reports of “vaccine injury.” However, when making a decision as crucial as this one, we must know where our information comes from and the truth behind the way it is presented.

The Google Conundrum

As a new parent, I did the same thing every single parent in my state, probably in the country, did before bringing in my kid for his vaccinations: I googled "vaccines." Big mistake. There were no obvious signs that I had fallen down the rabbit hole. In fact, I was directed to some very official looking websites, one of which was The National Vaccine Information Center.


National Vaccine Information Center. That sounds official. And I need information on vaccines. Great. It took me a while to realize that the site I was visiting belonged to an anti-vaccine organization. (As Dr. Ari Brown pointed out during this weekend's Got Your Shots immunization conference here in Minnesota, you always want to get your vaccine information from a website that has a scrolling ad for lawyers on the margin of the page, right!) Then there's the Vaccine Safety Council. Again, sounds official. And I want safe vaccines. Let's head on over there and see what gives. And so began some of the most stressful months of my life, becoming scared of harming my son with vaccines, coming to realize, through research, that I had been sold a bill of goods by the anti-vaccine community, and was in danger of putting my son's life at risk if I didn't vaccinate. Somehow I climbed out of that rabbit hole and got back on steady ground.  I know other parents face the same terror I felt after doing that first Google search, so I want to provide some basic information here in the hopes that it can be a kind of Cliff's Notes for you or new parents you know who are doing the vaccine thing. As new and expecting parents, the last thing we want and, frankly, have time for is examining verbiage, nuance of language, and point of view on websites we come across during a 2am Google search between nursing and changing a diaper. What I learned was that I could not take anything for granted--I could not assume that seemingly straightforward, unbiased names like "National Vaccine Safety Council" or "Vaccine Information Center" were providing factual information. Notice that none of these sites call themselves "The Anti-Vaccine Clearinghouse" or "Moms Who Don't Vax." They refer to themselves as people desiring "safe vaccines" (hint: we already have them) or "more research" (hint: the research is in, and it's conclusive).


I want to provide some shorthand for you sleepy parents out there who want to know about some of the sites you find during a Google search. Please note: I only list the first five notable anti-vaccine sites that appear in a Google search for "vaccines" here. I'm happy that the CDC's site, the Children's Hospital of Philadelphia (CHOP)'s site on vaccines, and other credible sources are appearing higher and higher in this particular Google search. But in the meantime, if you are a new parent, please know this about the following websites you will encounter on your Google adventure.


1.) National Vaccine Information Center: Anti-vax organziation run by an anti-vaccine activist named Barbara Loe Fisher. Unfortunately, this is currently the third or fourth link that shows up under a Google search for "vaccines." To get a sense of what these folks are about, check out this story from Discover Magazine online.


2.) SafeMinds: Anti-vax organization run by another anti-vaccine activist named Sallie Bernard, former marketing executive. Left Brain Right Brain, a science blog, says this about the organization:

"SafeMinds has shown themselves to be very resistant to the very research they called for. Studies which show a lack of association between thimerosal containing vaccines (TCV’s) and autism are always rejected by SafeMinds. They are not alone in this, groups such as Generation Rescue and the National Autism Association(NAA) have also refused to accept the science.

Incidentally, one of the hallmarks of the anti-vax movement is an astonishing level of defensiveness. This is a trait you will rarely see (I've never seen it) in the pro-vax movement. Perhaps this is because we have nothing to be defensive about. You will also not see vindictive attacks on anti-vax activists from public health authorities and pro-vax parents, like this one Safeminds perpetrated on one of their pro-vax critics, a parent. Acts like this should go into your consideration of whether a source is trustworthy enough to earn your confidence.




3.) Association of American Physicians and Surgeons: a very official and "medical-sounding" organization that is anti-vaccine. For a detailed explanation of this organization's approach, please go to Science-Based Medicine's post on it. Shorthand: they had disgraced former doctor Andrew Wakefield speak at their conference.


4.) Natural News.com: Sadly, some parents look to this website as a source for medical information. It is notably anti-vaccine and has no problem providing "medical information" suggesting vaccines cause harm that is, frankly, nothing but lies. Even if you've never taken a science class in your life, you will quickly see through the stories posted on this very odd website. To give you an idea of how poor of a grasp the folks who run this website have on basic science, one of their recent headlines was: "CDC admits flu vaccines don't work (which is why you need a new one every year)" I nearly spit out my coffee when I read that one. It's astounding that these people don't understand that new flu viruses arrive every single year and that the vaccines are manufactured to guard against the new strains. They also claim "multiple studies" show mercury causes autism, something even most anti-vaxxers are now moving on from.


5.) Vaccines.net: this site has become very stripped down, but it still directs you to "vaccine adverse events," which is a somewhat unmonitored reporting system that collected all reports of perceived vaccine-related illness or injury. I hope to have a post from someone far more knowledgable than me on the VAERS (Vaccine Adverse Event Reporting System) set up by the U.S. government, and how it works, but long story short, someone can report (and apparently has) that their son got a vaccine and then turned into the Incredible Hulk, and that will be part of the VAERS reports; no causation is needed, just a report, even something overheard. I've read reports of a teenager receiving a vaccine, then thirty days later committing suicide, and it being part of VAERS because the reporting party wondered if the vaccine caused her suicide. Anyway, vaccines.net, despite the official-sounding name, is an anti-vaccine website.


6.) Vaccine Exchange: I honestly wouldn't have known about this site if the person running their Twitter account hadn't Tweeted us with some nonsense accusing us of not liking National Vaccine Information Center because we are cockroaches who scatter when light is shined on "the truth." (Because insults like this coming from  a site purporting to provide unbiased information about vaccines always inspires confidence in the site's usefulness.) Vaccine Exchange is just another site promoting an anti-vaccine agenda and using scary stories and misleading language to dupe new parents into buying into their stories. There's a lot of talk about "informed consent"--which has become shorthand for "antivax," because patients who choose to vaccinate their children are both informed (to the nth degree, actually) and have given their consent. You'll see stuff there about "Scientists Under Attack" and the fact that parents from West Virginia "have no right to decide what is injected into their children." If their overblown, meretricious prose doesn't tip you off, their poor web design might.


These are just a handful of the sites you might come across in a search on vaccines. Please take a look at the links on the right of this page for credible, science-based information on vaccines, as well as a few blogs from really smart people who do this infectious disease/immunology thing for a living. For a readable, accessible, but penetratingly intelligent--and accurate--account of the groups named above, please read "Yet Another Bad Day for the Anti-vax Movement in 2011" on the science blog Respectful Insolence.


I also want to point out one sad fact that I've had to come to grips with, and that is that the mothering.com board, for all its attachment parenting, breastfeeding, and "natural mama" support, is mostly an anti-vax board. You'll see a lot of links to books by anti-vaccine activists, and lots of justification for their reasons for not vaccinating. And once in a while you will see a valiant soul trying to coax them into using science. But I would warn any new parent away from this particular resource, as the rampant misinformation and scare tactics you see in the comments are not worth the trade-off for breastfeeding tips and lists of paraben-free baby products. 

Telling a Better Story, Telling the True Story

I have heard the success of the anti-vax movement described as a victory based on the fact that they tell a better story.

I take that to heart.

The truth is that the most persuasive, effective means of communication among parents is not the research paper, it’s not the newspaper, it’s not even the pediatrician: it is the anecdote. It is the story shared between parents. It's how we learn how to soothe a fussy baby. It's how we figure out which baby bottles work best. It's how we know what kind of diapers to use, what day cares or preschools to try. It's often how we choose our pediatricians. Anti-vax activists, having no science to lean on, have wisely chosen to utilize the anecdote to keep parents from vaccinating. Let me give you an example. 

They tell parents this: My son was a bubbly, happy one-year-old. Then he had his MMR vaccine and the next morning he was autistic. 

It’s an excellent story. It's a horrifying story. It suggests a kind of dark, chaotic danger at the end of a needle. And it has worked. It doesn’t matter that it’s not backed up by science or fact. Most scientific debates have a healthy amount of replicable research on both sides. Not this one. And still, this anecdote has resonated across the country.

The medical community and public health authorities have been slow to respond, not because they're slow, but because they have been unable to understand why firm science and the reassurances of replicable science, clinical trials, and wide-ranging research has not quelled this fear. The anecdote is anathema to the medical community, which is why it hasn’t occurred to them, until recently, to use it as a tool in this fight.

 It’s time for pro-vax parents to begin telling their anecdotes. We have an advantage because we have anecdotes—and we have science to back it up. It’s a powerful combination, and it's time to put it to use.

Many people have asked me why, as a parent who vaccinates, I care about immunizations as much as I do. The answer is easy. I live with the guilt of having put my son at risk, for three months, of contracting a potentially debilitating, deadly disease because of a very sophisticated, well-told lie I discovered during my "research" on the internet as a new mom. My son was set to get his MMR vaccine at twelve months. I delayed it until he was fifteen months. And if I had not had my own come-to-Jesus moment during those three months, realizing that my son could die because of an unfounded fear I had of vaccines, I can’t tell you when I would have vaccinated him. In those three months, he could have been one of the children infected with measles. He could have been hospitalized. He could have died. And it would have been my fault for basing a decision on a story that I’d been told, one that had no basis in fact. It would be impossible to continue living.

When I realized this—luckily not too late-- I got angry, the same way I’ve been angry at lies that affect my life in the past. For several years, I was a journalist who focused on corporate misdeeds; I took issue with pharmaceutical companies, how many of them paid for research to show their products were harmless. But none of the machinations I investigated as a journalist can compare to the outright fabrications I’ve come across in this anti-vax movement, which targets vulnerable new parents who want nothing more than to keep their children from harm.

When the public health authorities and pediatricians challenge the claims, they are, unfortunately, unconvincing. And it's not their fault. The anti-vax movement has sowed suspicion among parents of a doctor’s true motives. For doctors who have seen vaccine-preventable diseases ravaging a child's body, or even killing a child, vaccines are a no-brainer. I think very few of them have ever googled “vaccines” and “vaccine safety” to see what, exactly, it is that parents find when they do this search—as ALL of them do. If they did this, they would know what they are dealing with and they could address it head on.

It's time for parents to begin working with medical providers and the public health authorities to reframe this discussion and to harness the power of storytelling. New parents are also in desperate need of context and perspective. They need to know that a breastfed baby gets seven times more aluminum in the first six months of breastfeeding than she'll receive in the whole course of childhood vaccines. They need to know that vaccines have side effects and potential complications--that are as similar in the former and rare in the latter as any number of commonly prescribed medications.

An example: My one year old daughter was wheezing after having a cold for a few days. I took her into Urgent Care. The doctors became concerned that she had pneumonia. Turns out, she had bacterial pneumonia and she was hospitalized. I grew terribly afraid. Here was this impossibly tiny child on my lap, with an oxygen mask on, dealing with a serious infection. “We’ll need to give her a shot of antibiotics,” the doctor said. “It burns a little; it’s not comfortable.”

Did I think twice?

No.

Side effects include much the same side effects as a vaccine. Did I think twice?

No.

Now, if I had looked up antibiotics on Google before deciding to let my daughter have this shot, as I did before scheduling my son's vaccines, I would have discovered an FDA report that read: “Increased risk of death with Tygacil antiobiotic compared to other antibiotics used to treat similar infections.” Would I have hesitated to let her have the shot? Probably.

But I didn’t have that luxury. Her increasing illness and the possibility that it, itself, could lead to death, trumped all of that. The thought that I would deny my child a medicine that could ease her suffering, possibly keep her from getting worse, never crossed my mind. To do otherwise would have been criminal. I wonder if I would have even been allowed to leave the clinic without it.

And yet a vaccine is just as important as this shot my daughter had. The difference is that your child is not yet sick; you are protecting the child from becoming sick. And so the impetus is not there. I often ask vax-hesistant parents if they were in my situaton, with a child suffering, if they would have refused the antibiotic shot because there were risks involved. No one has said yes.  

Let's start telling our own stories. Let's tell parents why we vaccinate. Let's step into this dialogue, let's take it over. Let's start telling the better story. The true one.

Vaccines Cleared Again as "Culprit": or, Whose Mind Do You Trust?

For any parents out there seeking fresh reassurance that immunizations do not cause autism, perhaps this week's announcement of research results from the Institute of Medicine will provide some.

Using seventeen years of data, the institute found absolutely no link between immunizations and autism; more, it found that immunizations are overwhelmingly safe, and that bad reactions are exceptionally rare, especially considering how many vaccines are given across the globe.

But, tragically, those with a great deal at stake (mostly money) in perpetuating the falsehood that vaccines not only cause autism, but are responsible for a host of health problems, continue to deny the science and find ways to scare parents into skipping vaccines. As parents ourselves, we understand all too well how that visceral fear of harm coming to our children can be stimulated--and taken advantage of.

The National Academy of Sciences has nothing to gain by lying about the research. It is an independent body of researchers and scientists. The question of undue influence aside, the anti-vaxxers then ask if the science has been interpreted correctly. We would ask you to judge for yourself the qualifications of those minds from the Institute of Medicine (and all the minds responsible for producing the more than 1,000 vaccine studies the Institute analyzed) versus the qualifications of non-scientists, public relations professionals, and autism activists from anti-vax organizations like National Vaccine Information Center.

In order to continue believing the vaccine-autism non-link, you would have to believe in a decades-long conspiracy among the United States government, the greatest scientific minds in the country, university researchers, epidemiologists, including those from the Centers for Disease Control and the World Health Organization, pediatricians across the country, and drug-makers. That only a single man, over the course of this entire debate, has come forward to make "scientific" claims that immunizations and autism are related, is telling. One would actually think that more folks would take advantage of an opportunity to become famous--to be the one guy or gal who could definitely prove a link between vaccines and autism. More telling, though, is that that single man who did claim to find a link--Andrew Wakefield--faked his results, manipulated his subjects, kept that manipulated sample size to under fifteen, and was stripped of his license to practice medicine as a result of his fraud. The Lancet, which published this study, retracted it entirely. In contrast, the New York Times describes the Institute of Medicine this way:

The Institute of Medicine is the nation’s most esteemed and authoritative adviser on issues of health and medicine, and its reports can transform medical thinking around the world. 

We then turn to concerns  that have some real science behind them. For example, this study found that while exceptionally rare, immunizations can cause negative effects in some immuno-compromised individuals (much like any medicine might). It is in this area of the study that you will likely see many anti-vaxxers flock to in order to proclaim that the study "proves" vaccines are harmful. What you won't get from them is context.

Let's take the finding that one of the risks of receiving the chickenpox vaccine is that, years after the vaccination, some people (immuno-compromised individuals, such as those undergoing chemotherapy) can develop pneumonia, meningitis, or hepatitis if the virus used in the vaccine in a weakened form "reawakens" because of that cancer. This, you'll hear anti-vaxxers say--and many already have--proves that the safety of vaccines is still in question.

Not quite. Here's your context. The exact same risks of developing meningitis, pneumonia, and hepatitis are present in individuals who got chickenpox naturally. No, that's not quite right--the risks for developing these health problems are far *greater* in those who had chickenpox naturally. Read: the risk is greater in those who were not vaccinated and who contracted chickenpox the old-fashioned way. Or the new-fashioned way, I suppose: at "chickenpox parties," where unvaccinated children are exposed to an infected child so they can gain "natural immunity" in the form of the chickenpox virus.

We do find it heartening that as more and more of these conclusions from wide-ranging, objective scientific research firmly establish that there is no link between immunizations and autism, the retorts from anti-vaxxers begin to sound as error-ridden as they, in truth, are. In fact, I have noticed a note of desperation creeping into some of the quotes I've been reading in the press. Take the quote in the New York Times article from Sallie Bernard of SafeMinds, which contends there is a link between vaccines and autism. She says,  "I think this report says that the science is inadequate, and yet we are giving more and more vaccines to our kids, and we really don't know what their safety profile is."

It is interesting that a survey of more than 1,000 peer-reviewed research articles on vaccine safety, which finds no link to autism and very few adverse effects in the population to any vaccine, is considered "inadequate" to Ms. Bernard.

If you're still not sure whose scientific judgment to trust, you can compare credentials. Ellen Wright Clayton, the chair of the IOM's panel, is the Craig-Weaver Professor of Pediatrics at Vanderbilt, the Director of the Center for Biomedical Ethics and Society. She is considered one of the country's leading experts in Inborn Genetic Diseases, and as been a member of the IOM since 2006.

Sallie Bernard is the founder and former president of a full-service market research and marketing consulting firm and is the parent of an autistic chid.

Here is the New York Times article on the new findings by the Institute of Medicine. Vaccine Cleared Again as Autism Culprit.

Moms Who Vax Newsletter, #1

Parent-to-Parent

We have discovered that, at least in Minnesota, the public health authorities and medical establishment is starting to pick up on the fact that parent-to-parent communication is an effective tool for increasing immunization rates. I recently participated in a panel discussion in front of local media to mark National Infant Immunization Week. On that panel were three eminent pediatricians (including the Head of Pediatrics at the Mayo Clinic), as well as noted public health authorities, me, and the amazing Shannon Duffy, whose daughter died of a vaccine-preventable disease, and not because she was choosing not to vaccine. Take a look at the link for her story. Shannon's story is so profoundly moving and devastating, and it is an effective way to get the message across to new and expecting parents.

After that media event, I stood with these brilliant doctors and talked about vaccine-resistance. They said all the right things, talked about explaining the lack of a link between vaccines and autism, about continuing to press the message in appointment after appointment, but at a certain point, I said: "You know what would have helped make the decision easier for me? If the word 'death' had been used in my discussions with my pediatrician. She allowed me to delay my son's MMR (by 3 months) without fighting me on it at all. Telling me that measles can cause death would have kept me up at night." The doctors looked at one another, but Shannon nodded vigorously. Doctors have become afraid of using the D word, even when warranted. We are warned time and time again of the risk of death from anesthesia, rare as it is. Why do we not hear this, even in passing, in the pediatrician's office? Is it too harsh? I got the feeling from the doctors that it was. But it's all in the delivery, I reminded them. You don't get the James Mason God-voice and boom "Death!" You say, gently, that you are ethically obligated to let them know that the risk of not vaccinating includes serious disability or death. 'Nuff said.

Patient Liaisons

Since the NIIW panel, the Minnesota Department of Health has asked me to be part of two more panels, including one on vaccine resistance. I also noticed that at my son's pediatrician's office, they are looking for volunteers to act as liaisons between the medical community and parents, not just for vaccine issues, but including them. I plan on volunteering for this and would urge anyone in the Twin Cities to volunteer as well. If you don't live in Minnesota, consider offering this service to your pediatrician. It's a given these days that nearly every practice will have some unvaccinated children. It is in our children's best interest to get these kids vaccinated, because an infant in the waiting room is incredibly vulnerable to a sick unvaccinated child. Whooping cough and measles have both recently been spread in this manner. Consider approaching your pediatrician with a proposal to run a few casual gatherings with new parents. Have a doctor present, of course, but as a parent, your experience has much more weight in so many cases (as sad as this is). 

Law Changes

In Minnesota, we are looking to close the loophole that allows conscientious objectors to vaccines to face no obstacles in getting their children admitted to school. We do not know where to begin. If any of the Moms (or Dads) who vax out there have advice, connections, pointers, etc., for us, we'd be grateful. We are targeting our state legislature, and think we may have a representative who will present the bill, if we can only get this thing started. Several of our Minnesota Moms Who Vax feel the anti-vax movement in Minnesota is ramping up again. There is even a new "political party" based on vaccine rejectionism, called the Canary Party. We are looking for advice from knowledgeable folks about how to build this grassroots movement of vaccinating parents, to help vaccinating parents to shake off the complacency and become more active in this fight. Please e-mail us at momswhovax@gmail.com if you have any tips or would like to help.

Success Story

Finally, I just wanted to share this heartening story from our Mom Who Vaxs, Carly. Her cousin comes from a family of non-vaccinators; their father is a chiropractor who has taught his kids that vaccines cause all sorts of horrible things. This person's sister is not vaccinating her new baby because "a friend of mine's child developed Down's Syndrome after being vaccinated." Knowing this as background, Carly's story may brighten your day.

Hi ladies,

I had to share a small piece of good news on the immunization front. My cousin John's baby arrived a few days ago. I went to visit them yesterday at the hospital, and they ARE vaccinating the baby! Their son got the Hep A vaccine at the hospital. John said he spoke to a pediatrician that was willing to sit down and explain everything to him, which he appreciated, and his wife is vaccinated herself and in favor of it. John is also getting himself vaccinated and the doctor started him out with the whooping cough vaccine.

So in this case, a pediatrician taking a hard line and refusing to discuss the immunizations would have turned my cousin off. The soft approach worked better in reaching this "middle of the road" parent.

Hope you both and your kids are well!

Carly

Father of Three Autistic Boys Speaks Out--in Favor of Vaccines

Please take the time to read this post from Rob's blog Lost & Tired. He is the father of three boys, all of whom fall somewhere on the spectrum.

Biography of a Measles Outbreak

Wondering how a vaccine-preventable disease outbreak can spread? Wired offers a clear-eyed view from the Arizona measles outbreak. As parents facing the choice about whether to immunize our children, we owe it to them to understand the truth about the presence of vaccine-preventable diseases in our country and communities, how they get here, and how they spread. You can read the story of the Arizona measles outbreak here, but below you'll find an excerpt from the play-by-play of how that outbreak unfolded. If any non-vaccinating parent has told you that these diseases are effectively gone in the United States, and that immunization is unnecessary, take a look at how measles spread in Arizona. Please also take special note of two facts: one, that the outbreak was started by an adult who had traveled to another country and returned to the United States and two, that many of the victims were children who had intentionally been left unvaccinated as well as infants who had not had a chance to be vaccinated:


In February 2008, a 37-year-old Swiss woman who had never been vaccinated against measles arrived in Tucson after a visit to Mexico. She developed breathing problems and a rash and went to a local hospital’s emergency room. They suspected she had a viral illness and admitted her.

Here’s what you have to know, to understand what happened next. Measles is extremely contagious; up to 90 percent of unvaccinated people who are exposed to it will get it. And if someone nearby has it, youwill get exposed — because coughed-out measles virus can travel across a room, and hangs in the air for hours. The best protection against spreading measles in a hospital is putting someone in a negative-pressure isolation room, which is engineered so no air can leak out into the rest of the hospital. It took two days to get the Swiss tourist into isolation, because measles is rare enough in the US that it was not the hospital personnel’s first thought.

Meanwhile:

A 50-year-old woman who had spent an hour in the ER at the same time as the Swiss woman caught the disease from her. Patient 2 got taken care of, went home, and started feeling feverish nine days later. She had difficulty breathing and thought at first she was having an asthma attack, so she went back to the hospital and was admitted for two days. That she had measles would not be discovered until six days after that.

While she was  in the hospital, Patient 2 unknowingly infected a 41-year-old health care worker who took care of her — and who was scheduled to get a measles-vaccine booster shot that very day, because the hospital was also caring for the tourist. Patient 2 also passed measles to an unvaccinated 11-month-old boy who was in the same ER while she was waiting to get checked for asthma, and to two unvaccinated siblings — 3 and 5 years old — who were visiting their mother on the same hospital floor after Patient 2 was admitted.

Patient 3, the health-care worker, passed measles to a 47-year-old woman in her emergency department — who later  ended up in an intensive care unit with measles pneumonia — and later to a 41-year-old man in his home. Patient 4, the toddler, gave the virus to an unvaccinated 1-year-old while they were both in the same pediatrician’s office. Five other people were infected somewhere in their everyday lives: a 2-year-old boy who had never been vaccinated and who also ended up in an ICU with seizures brought on by high fever; a 9-month-old and an 8-month-old, also unvaccinated; and two adults, 35 and 37, who might have gotten one dose as children, but had no documentation of receiving a second dose.

Those 14 are just the confirmed cases. In addition to them, there were 363 suspected ones, and today’s paper makes clear authorities believe there were more illnesses than they know. And for every known case, there were dozens or hundreds of exposed people who had to be checked: 145 passengers on the tourist’s flight from Mexico, 1,795 patients in the ER that treated Patient 2, 25 people who attended church with Patient 7, 10 kids in the same day care center as Patient 8.

I'm Mad, Part One: Mercury/Thimerosal

New and expecting parents are bombarded with information about all the bad things they'll need to keep their children away from: BPA in bottles, parabens in lotions and bath supplies, phthalates and PVC in toys and teethers. It can be overwhelming. And yet the science linking these three chemicals to negative health effects is thus far nearly conclusive (I will link to CDC studies on these chemicals at the end of the article). Luckily, phasing them out of your life is a risk-free and mostly hassle-free endeavor. Most if not all baby bottles today are free from BPA; in some states, including Minnesota, phthalates are not allowed in children's products. Parabens are easily identifiable in personal products (look for methylparaben, butylparane, propylparaben) and can be avoided. There is no trade-off. You are not putting your child at risk by choosing a BPA-free bottle.

So after crossing those things off the list, new and expecting parents often turn to vaccines. And many of them make the same mistake I made as a new parent. They turn to Google, the place where eminent scientific mind Jenny McCarthy says she got her "degree."The first sites we find are not Every Child By Two and the Centers for Disease Control, the Gates Foundation and Partners in Health. Instead, we find sites like the so-called National Vaccine Information Center, which masquerades as an impartial watchdog agency (hence the "org" in its web address), and Vaccines.net, which claims that vaccines cause all sorts of diseases and allergies. For the neophyte, it is nearly impossible to sort the wheat from the chaff here, and the effort to do so can be absolutely terrifying.

You will hear lots of terrible things about vaccines. Nearly all of them are lies. The word "lie" is inflammatory, but I use it here deliberately. It is a word, and a characterization, you will not see on public health websites, from the CDC, from Every Child by Two, or any of the sites of organizations whose job it is to study the safety and efficacy of vaccines. Even though they know this is true. 

But we're parents who have been on both sides of this debate. We've been scared, too. But after looking at the science and putting things in perspective--something the anti-vax community will not do, perhaps because they are incapable, perhaps because their science literacy is so low--we got mad. 

I'm mad about lots of things. We all are. In an effort to save some new parents the same heartache, worry, anxiety that we suffered as we tried to figure out the vaccine thing--and to keep parents from delaying their children's immunizations out of fear, as a few of us did before we understood our mistake, putting our kids' lives at risk in the process--we are initiating a series of "I'm Mad" posts. These posts will address some of the most volatile but common claims anti-vaxxers make when trying to scare new parents out of immunizing their children. Today we start with the thimerosal question.

Claim: Thimerosal in vaccines causes/caused autism. If it doesn't, it's still toxic. 

I worried about thimerosal for a while. People told me it was straight-up mercury being injected into my child's body. Mercury is poison, right? It's what is causing all this autism, because although thimerosal has been used a preservative in vaccines for decades, without the attendant rise in autism, our kids just get so many more immunizations now, right? 

Well--except that thimerosal hasn't been in vaccines since 2000/2001 and autism rates continue to skyrocket. I shouldn't have to point out, but I will, that this is the exact opposite effect of what we'd see if thimerosal caused autism, as anti-vaxxers long claimed. I later learned that the preservative had been taken out of vaccines by the government and public health authorities not because of any toxicity concerns but because parents believed the Wakefield study and they feared vaccination rates would fall if this gesture was not made. Thimerosal does not cause autism (Immunizations and Autism: A Review of the Literature in the Canadian Journal of Neuroscience). 

Mercury poisoning? That sounds scary. Except that your typical tuna sandwich contains much more mercury than a single vaccine. Actually, the mercury in tuna is scarier, because it is methyl mercury, a serious neurotoxin, while the mercury in vaccines is ethyl mercury, which is, even at high doses, far less toxic than methyl mercury (but in the doses we're talking about in vaccines are literally traces anyway). Bottom line: mercury poisoning is an impossibility when it comes to vaccines, even if you were to get the whole course of childhood vaccines (back when they contained thimerosal) in a single week.

But here's the main point that goes overlooked. Right now, vaccines are nearly the lowest-risk medicine we have available to us. The reports of adverse effects--which include fever and soreness at the injection site--are so low compared to the number of doses administered, that they are considered one of the safest, if not the single safest, medicine in the world. And their benefits are this: they keep your child alive. It is as simple as that.

Too few of us parents have seen measles. I know of no one who has seen polio, except for people who have lived in Afghanistan and India, where polio is still endemic. Endemic. This means it is "regularly" found in a population. Know anyone who travels to India? Might there be any children at your local school who have Indian relatives? I know there are at least eight in my child's preschool alone. I hasten to add that their parents didn't think twice about immunizing them, because of their travels and because they, too, had seen these diseases take lives when they were growing up. Is there a reason why your husband or wife might be required to get a polio shot if he/she hasn't gotten one if she/he is deployed to Afghanistan? This stuff is a plane ride away. And it is not theoretical.

Haven't seen what Tetanus looks like? Here is a photo of a child with tetanus. Here is a photo of a child who suffered polio. Measles looks like this. Is it worth forgoing vaccines against diseases like this, and many others, that are absolutely extant in our world and either in this country (or in my case, my state) or a plane ride away, carried home by an unwitting traveler much like the toddler who brought measles back to Minnesota from Kenya this winter, because of fear of a toxicity that simply doesn't exist? It's something to consider. For me, it became an easy answer when considered this way. 

Science-Based Medicine offers a look at the claims of toxicity of vaccines that you are likely to hear as you explore the vaccine question. We owe it to ourselves to read the post in its entirety before making any decisions about whether or not to get on board with some of the more inflammatory claims we still hear from people who don't vaccinate their children and don't want you to vaccinate either. 

You can also get the word from these organizations. Below are links to their statements on the safety/toxicity of thimerosal. Again, this is really a moot point, as no childhood vaccines, save the multi-dose vial version of the flu shot, contain any thimerosal. But it's a point worth making, as it demonstrates the ways anti-vax proponents will manipulate and misinterpret the science to new parents, hoping that most of them won't bother to look into their claims.

World Health Organization's Statement on Thimerosal

 Centers for Disease Control Statement on Thimerosal

FDA on Thimerosal

Journal of Pediatrics publishes study on mercury in vaccines

Mom to Mom: Pam's Story

Pam's son Zachary

I received all of my vaccinations on time as a child growing up. My mother was a medical technologist and had taken blood from a patient infected with measles. She had seen these diseases first hand. I began to look more deeply into vaccines when I was pregnant with my first child, during the fall/winter of 2009. I knew the H1N1 flu vaccine was recommended, especially for pregnant women, and I was considering whether I should get the H1N1 vaccine as well as the regular flu vaccine. The first thing I did was talk to family and friends who were pregnant or had been pregnant to find out what they had done. I spoke to people who were pro-vaccine as well as people who were anti-vaccine. My own doctor's strong recommendation as well as hearing about pregnant women who had died from H1N1 led me to get both flu vaccines while pregnant. After my decision to vaccinate myself, I began further research about vaccines for my baby. I found that a lot of what I heard and read from the anti-vaccine side had a strong basis in fear and "what if" thinking. What if vaccines cause autism? What if vaccines are causing the rise in allergies among children? While these possibilities triggered what I would call the "fear mind," my rational mind was able to look at the research available online, much of which I found through Ashley's blog (Science for Sale). I saw that the research overwhelmingly supported the safety of vaccines. I could also see that the pro-vaccine argument was research-based, history proven, and logical. In addition to online research, I questioned pediatricians whenever I had the opportunity. I spoke with 5 different pediatricians who all recommended vaccinating without reserve. They said they vaccinated their own children and grandchildren. They spoke of the dangers of not vaccinating. We decided to vaccinate our son Zachary, and he has received all his vaccinations on time starting from the day he was born. He has been extremely healthy and the only reaction to the vaccines has been a couple hours of being tired and cranky. I do still get nervous when I bring him to get vaccinated. I wish the doctors gave more information about what he is being vaccinated for and the ingredients in the vaccine and the safety of those ingredients. Regarding those details, I had to find out the information on my own. I understand doctors and nurses are busy and weary of the vaccine debate, but I think it would help parents who are nervous about vaccines to have more access to information. 

Regarding my interaction with the anti-vaccine community, I have had a hard time with this because I have three cousins who I was very close with growing up who are not vaccinated. Their father is a chiropractor and for whatever reason did not trust that vaccines were safe. They are now all having babies of their own, and the vaccine issue has surfaced in discussion and emails. The discussion can get contentious, and I don't want to create a bad relationship with family members, so I try to relay the pro-vaccine argument as clearly and objectively as possible. Although I have not expressed my personal fears to my cousins for fear of ruining our relationship completely, I do fear for my son who is almost 11 months and has not received all his vaccinations yet. I want my children to be able to play with and know their cousins, but as a mother I know I have to protect my child in the best way I can. I would feel responsible if he contracted a vaccine-preventable illness from people who I knew were not vaccinated. I know that I'm taking a risk when my son is around these family members and its an issue that I still struggle with. 


If you are a parent who chooses to vaccinate and would like to share your story, please send us your story. We are also always looking for cute pictures of your vaccinated baby or child for our "Cute Vaccinated Kid of the Week"!

Mom to Mom: Karen Ernst

Editor's Note: From time to time, we'll feature a blog post by a parent who vaccinates. If you're a parent who vaccinates or who was afraid of vaccines but now vaccinates and would like to write a guest post for us, please contact us. We'd love to hear from you!

If your children are vaccinated, why do you care whether or not I vaccinate mine?

Most of the parenting decisions I have made are none of your business.  Did I breastfeed or bottle feed my children?  Did I Ferberize them or sleep next to them in my bed?  Did I stay home with them or maintain my career and send them to day care?  I'm not telling you because these are personal decisions which will have no effect on your life or the lives of your children.

The decision to vaccinate my children, however, is not personal.  It is a matter of public health.  And I have the right to know that my neighbors, and that you, are vaccinating.  The answer about why I do care hinges on the concept of herd immunity.

Do not be fooled by herd immunity naysayers.  Doctors noticed the benefits of having a large population immune to certain diseases during the smallpox outbreaks in the nineteenth century.  150 years ago, doctors noted that in communties where a large percentage of the population had either been innoculated or had contracted smallpox, the virus could not make inroads and did not effect the susceptible remainders of the community. (See Fine P (1993). "Herd immunity: history, theory, practice". Epidemiol Rev 15 (2): 265–302.)  In the mid-twentieth century, public health officials used herd immunity to eradicate smallpox from the planet.

Herd immunity functions properly when enough of us are vaccinated to hinder the introduction of certain diseases into our communities.  For example, polio has been absent from the United States since 1994 simply because enough of us have received the polio vaccination.  The virus has trouble finding  bodies to grow in, and therefore it isn't in circulation.  But when too few of us are vaccinated, we find ourselves in the midst of an outbreak, like the measles outbreak Minnesotans are living through right now.

But my children are vaccinated, so why should I worry about the measles outbreak or the unvaccinated lot who are allowing the measles virus to circulate throughout our community?

Vaccines are not a guarantee.  They can't always provide complete immunity for every person every time.  The MMR vaccine produces immunity in 95% of those who receive the first dose.  Doctors intend for the second dose to catch those who did not build immunity after the first dose.  Nonetheless,  some who are vaccinated are still not immune.  

Not everyone can be vaccinated.  Some people are too immuno-compromised to receive the vaccine,  others have allergies to some of the components, and some are too young to receive the vaccine.  Many of those who died in this year's pertussis outbreak in California were too young to have completed the immunization against it.  

And some people in our world have such weakened immune systems that their survival depends on the health of the community.   The mother who has terminal cancer deserves to spend as many days as possible with her children without her life being cut short by a vaccine-preventable disease.  Grandchildren do not want to lose their grandparents early due to a bout of influenza.

I care whether or not you vaccinate because I care not only about my children and their health, but I care about others in my community.  I care about the people I see every day who have asthma or rheumatoid arthitis, and so I get my kids their shots, and I want you to do the same.

Karen Ernst is outnumbered by the four main men in her life, ages thirty-something, seventeen, seven, and two.  She is currently a stay-at-home mom, but has also worked as a high school English teacher, where, among other things, she taught her students to examine the credibility of what they read and the reliability of their own assumptions.  She carries this passion into her armchair advocacy for vaccines.