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.

Taking Back "Informed Consent"

Pediatrician Richard Pan also happens to be the California state legislator responsible for introducing AB 2109, which will make getting a vaccine exemption for philosophical reasons a touch more difficult (the bill will require a parent to get a sign-off from a health provider indicating that the health provider outlined the risks of not vaccinating).

The uproar among California’s vociferous but small anti-vaccine community has been predictable, but one thing Dr. Pan mentioned in a wonderful conference call Every Child By Two set up last week has stuck with me. He said it’s time for the pro-vaccine community to “take back the term ‘informed consent.’” I was thunderstruck by his comment.

Yes, I thought to myself, of course! Anti-vaxxers tell new parents that immunization laws trample on their rights as parents to make medical decisions, without mentioning that their choice not to vaccinate their children tramples on the rights of everyone around them to a healthy life. The code word for their opposition to vaccines is often “informed consent.” So what is informed consent? A simple Google search will bring up articles and web pages from a number of very official-sounding websites, which are actually anti-vaccine organizations (National Vaccine Information Center, Vaccine Information Center, etc), and there you will learn that doctors like to jab kids full of toxins at every well-child check and they like to keep the contents of those shots super secret. Therefore, the parents are not informed.

This claim is, of course, without merit. Vaccine ingredients are publically available, and the Vaccine Information Sheets (VIS) provided at well-child checks, along with supplemental sheets each provider may choose to give parents, contain transparent information about what is contained in each shot. The same cannot be said of other injections regularly given during doctor’s appointments, like antibiotics for children suffering from illness, for example. Of course the anti-vaccine activists don’t make mention of this fact.

The truth is that the raising the flag of “informed consent” with regard to vaccines is like American women marching in the streets in 2012 demanding the right to vote. We already got it. Only the anti-vaccine activists have misapplied the term to their desire to not vaccinate their children and put the community at risk.

But there is one scenario in which “informed consent” has not been fully implemented, and it has nothing to do with the ingredients of a vaccine. It has to do with informing parents of what can happen if they choose not to vaccinate. And telling them in clear, transparent language. Informing parents that not vaccinating their children can lead to serious illness, disability, and even death. As a new parent, I was not informed of this. I did not hear the words “risk” from my pediatrician except in describing the “risks” of the vaccine itself—fever and soreness. What if I had been “informed” that not vaccinating my child could put my child at risk of developing a potentially fatal illness, or even a long hospital stay? What if I had been told that not vaccinating my child would put the kid down the street with leukemia at serious risk? Or the one in my playgroup with a gelatin allergy? Maybe I would not have delayed my son's MMR vaccine for three months. Maybe, after each well-child check, I would have run to my social network and reminded my fellow parents why vaccination was so crucial.

In fact, the failure of informed consent is not that doctors and vaccine manufacturers do not inform parents about what is in vaccines and the risks of the immunizations. The failure is that parents have not been adequately informed of the risks of not vaccinating. And so Dr. Pan is right. It’s time to take back the term informed consent and apply it to something real: the risks of not vaccinating.

Moms Who Vax: Kristen's Story

By Kristen Robinson

Kristen and her children

When my daughter was born three years ago I never questioned her having to be vaccinated. I read through the book What to Expect the First Year a million times and would always just sort of skim past that whole chapter. I didn't question her need for them, I was pro-vax, and I knew she needed the vaccines to stay healthy—although back then I would not have called myself pro-vax. I didn't even know there was such a thing as being pro or anti-vax! I just thought everyone vaccinated their children. I had no clue how heated of a topic vaccinations could be or how strongly people’s opinions on the subject could be.

When I was pregnant with my son, who is now eight months old, I knew I would vaccinate him as well. Or so I thought.

I did not have a great pregnancy. I did not enjoy being pregnant and just wanted it over with. So I can only equate my feelings of guilt over the way I felt about my pregnancy as to why I suddenly was having doubts about vaccinating. I was suddenly terrified something would happen to him.

I am "friends'” with a woman who is against vaccinating, so I reached out to her and she seized on my hesitation. She began sending me all types of emails and articles begging me to at least think of spacing the vaccines. When she saw that tactic wasn't working very well she started mentioning how a friend of hers has a little boy who had a reaction to the MMR at thirteen months, a reaction I happened to know was a 1 in 10 million doses kind of adverse reaction. Still, the thought that something could possibly happen had been planted in my head. I was starting to cave, and she knew it.

The final anti-vax article she sent to me was over the top, but I will admit that I read it and got scared, which the whole intent of the article and the woman who sent it. She knew what my weakness was and she preyed on it. I knew as I read it that it was fear mongering at its best, but I couldn’t stop reading. Then, after sitting there digesting it, I read it again and I started to see the flaws. There was nothing scientific or factual backing up any of the claims in this article. Nothing. In fact, it was purposely written to scare moms just like myself who are on the fence. It made me sick.

I turned completely in the opposite direction and I picked up the phone and made the appointment for my son to get his two-month shots. He has had all of his shots since. I now have this enormous feeling of gratitude towards this "friend" every time my son gets his vaccines because if she had not sent me that final article I would have in all likelihood joined her on the dark side and decided not to vax. Now, the thought of NOT vaccinating scares me much more than anything that could ever be written about adverse reactions or any of the other fear-inducing thoughts anti-vaxxers try to put into our heads as parents. 

I know that there are many, many other mothers out there just like myself who have a fear of vaccines. I hope by writing this that I have helped them know that they are not alone. My hope for every parent is for them to be informed by reliable information, to be presented with facts not fiction, and to feel confident and supported, not made fearful by claims that have nothing to back them up.

Kristen Robinson is a stay-at-home mom to a little girl, Presley, who is three, and her little man, Kadena, who is eight months.

Civility and the Vaccine Discussion: Found!

UPDATE: Well, unfortunately, I may have spoken too soon. The course's discussion board has been infiltrated by anti-vaccine folks and followers of Age of Autism and I'm now totally depressed because the open discussion about science and vaccinology has become dominated by dialogue reminiscent of Bigfoot hunters arguing with Loch Ness Monster proponents. Sigh.

I just started taking a free online course on vaccines taught by Paul Offit, through an outfit called Coursera. The site offers a number of free online courses on a large number of topics, all taught by some of the top academics of the world, from Princeton to Stanford to Harvard, and beyond.

The course material for Offit's course is basic, which is great for folks wanting to learn a little about the history of vaccines, how they work, how they are made, and so on (though some people may be put off by Offit's straight-talk--I, of course, am enamored). But what I've found most exhilarating is the depth and breadth--and civility--on the discussion boards. A large percentage of the students come from outside the United States, interested in understanding the efficacy of vaccines so they can pass that information along to communities within their home country. Others are vaccine-hesitant parents, as I once was, who want to know more about vaccines. And there are several parents who have described themselves as living in communities with high vaccine-exemption rates and feeling like "fish out of water."

Of course I waited to post about this until after the course had started and enrollment was closed so we don't get an influx of anti-vaxxers--we have a handful of them in the course already but even they seem muted. The point is, in this vaccines course, even when we disagree, the dialogue is civil and open-minded. The students in the course are honestly curious about vaccines, and questions have been raised about why the pertussis vaccines seems to lose effectiveness so quickly, which is not interpreted as an anti-vax comment; why chiropractors seem, as a group, to be anti-vaccine, which is an honest question not an indictment; whether directly confronting anti-vaccine parents works best or if a softer approach is better, and so on. There are no agendas. I could turn cartwheels right now. Paul Offit's Vaccines Course, where have you been all my life?

Doing Our Part

In Minnesota, the Department of Health is moving forward with its effort to bring Minnesota school immunization law into line with CDC recommendations. I know, it sounds riveting!


In reality, this move is of exceptional importance, because, like many states, our immunization rules are confusing; CDC recommendations don't have to go through the legislative equivalent of the Tough Mudder race to come into play. In Minnesota, and other states, we do.


I bring this up because an important component of any possible new or revised rule requires, by law, a series of public meetings. These are opportunities for members of the public to voice concerns or support for the propose rule. Because this is an immunization rule revision, our friends at the Department of Health are certain to hear from a well-organized cadre of anti-vaccine activists and parents. Alas, on the pro-vaccine side--which can boast the largest membership, upwards of 90% of the parenting population--we are not so well-organized because, well, we have lives that don't revolve around likening pediatricians
to Nazi doctors and trying to push for "Nurenberg-style trials" for pediatricians (Source: International Medical Veritas Association. You want crazy? You got crazy. I refuse to post their website, but give them a Google search).


This being said, because the anti-vax contingent is so vocal and over the top, they tend to make a lot of noise and, like blowfish, appear bigger than they really are. So it's become important that parents who vaccinate their children because they know it's the right thing to do for their own kids, as well as the community at large (see Karen Ernst's fantastic post at Parents Who Protect) show up at these things. If you happen to live in Minnesota, please consider attending the Minnesota Immunization Rule Revision Public Meeting which takes place Thursday, June 14th from 5:30 p.m.-8:00 p.m. at the Orville L. Freeman Building in St. Paul. Detailed information is below. I have also included information about the video/satellite meetings across the state of Minnesota on June 18th. If you live in the greater Twin Cities area or beyond, consider high-footing it to one of the locations below. 


This will provide you an opportunity to speak up, show public officials another side of this debate. In upcoming days, I will also post a sample letter you can send to the Department of Health in support of these rules. The deadline for these letters is June 30, 2012.

Minnesota Immunization Rule Revision
Public Meetings

Interested persons or groups may submit comments or information on these possible rules in writing or orally until 4:30 p.m. on June 30, 2012.

The Department will hold two public meetings on the rules.

• Thursday, June 14, 2012
  5:30 - 8:00 p.m.
  Orville L. Freeman Building
  625 North Robert Street
  St. Paul, Minnesota 55155
  Directions 
  Parking in the Centennial Ramp is free after 4:30. The Green (or lowest) Level is closest to the main entrance. Map (PDF: 427KB/1 page)
  Please allow for extra time because of the construction and road closures around the Freeman Building and in St. Paul. Road closures and detours change often, see the Central Corridor Light Rail Transitsite for the latest. Attention: Non-MDH link
• Monday, June 18, 2012
  11:30 a.m. - 2:00 p.m.
  Video conference at locations listed below
  Registration is not required but is appreciated: Click to Register
  Select "MN Imm Rule Revision Video Conf - [city of attendance]" from the drop-down Event list.

MDH - Bemidji Office 705 5th St NW, Suite A Bemidji, MN	MDH - Marshall Office 1400 East Lyon St Marshall, MN
Crow Wing County Social Services 204 Laurel St Brainerd, MN	MDH - Rochester Office 18 Wood Lake Dr SE Rochester, MN
Polk County Public Health 721 S Minnesota St Crookston, MN	Roseau County Social Services 208 6th St SW Roseau, MN
St. Louis County Government Service Center 320 West Second St, Room 406 Duluth, MN	MDH - St. Cloud  Midtown Square 3333 West Division St, Suite 212 St. Cloud, MN
MDH - Fergus Falls Office 1505 Pebble Lake Rd, Suite 300 Fergus Falls, MN	MDH - Snelling Office ParkMississippi Room 1645 Energy Park Drive St. Paul, MN
Koochiching County 715 4th St, 3rd Floor International Falls, MN	Kandiyohi County Human Services 2200 23rd St NE Willmar, MN
MDH - Mankato Place 12 Civic Center Plaza, Suite 2105 Mankato, MN

Moms Who Vax: Lynn's Story

By Lynn Bozof

I have always been a mom who vaccinated her children. To me, it’s only natural: if you have children, you want to protect them. And vaccines save lives.

Evan Bozof

Unfortunately, my son died of a vaccine-preventable disease because I didn’t know that there was  a vaccine for meningococcal meningitis, when my son was a college junior, fourteen years ago.  Evan was a twenty-year-old junior, an honor student, and a pitcher on his college baseball team.  He was the picture of health.  Then he called one day with what he thought was a migraine, and when he was still very nauseated and sensitive to light a few hours later, I asked him to have his roommate take him to the ER.  The ER doctors told us that Evan had a “little virus,” and so he didn’t have to go back to his dorm, they would keep him overnight.

The next morning, our world fell apart.  At 7:00 AM, we were called and told that Evan had bacterial meningitis, with a five percent chance of survival.  We went from a “little virus” when we went to bed that night to a strong possibility that our son would die. 

Over twenty-six days, in three different hospitals, meningococcal disease ravaged Evan’s body.  Amputations of both arms and legs were not enough to save his life.  He lost kidney and liver function, suffered ten hours of grand mal seizures, and was eventually declared brain dead.  No parent should have to watch his or her child be disconnected from life support, flat-line, and be carried away. 

After Evan died, we found out that the military routinely vaccinated recruits for bacterial meningitis, and that the preceding year the American College Health Association had published reports about links between college students and meningitis.  The bottom line is that our son did not have to die.  There were vaccines available that could have saved his life, but we were not told about them.  Since then, I have made it my life’s mission as an original founder of the National Meningitis Association to raise awareness about meningococcal disease, its symptoms, and prevention.  I believe so strongly in vaccinations because they have saved millions of lives throughout the world.  What I wouldn’t give to go back fourteen years and have known about the meningitis vaccine.  I am confident that vaccines are safe and effective.

I am not scared of vaccines.  I am scared about what happens when parents choose not to immunize.  They may be well-intentioned, but they are wrong.  They are putting their child’s life, and those of countless others, in danger.  If you love your children, and there is no medical reason for them not to be vaccinated, then please vaccinate them.  Don’t let your child be another statistic, as my child was.

Lynn Bozof is an original founder and the President of National Meningitis Association. In addition to her work with NMA, she also spearheaded the blog Parents Who Protect and is a tireless advocate for protecting children from vaccine-preventable disease.

Editor’s Note: The Centers for Disease Control and Prevention (CDC) recommends the following meningococcal vaccination schedule for adolescents:

•                An initial vaccination at age 11-12

•                A booster dose at age 16

•                For those who receive the first dose at 13 through 15 years of age, a booster is

          recommended at 16 through 18

CDC suggests that adolescents receive the vaccine less than five years before starting college.

"Scare Tactics"

Recently, a mother who immunizes her children tried to post on a blog called "Modern Alternative Mama" in response to a worried mother of a newborn. The new mother had chosen not to vaccinate her baby out of fear, but was living in a community in the midst of a pertussis outbreak. Her pediatrician had called to ask if she might reconsider immunizing her baby at this point. The mother seemed worried--she didn't want to vaccinate, but clearly she didn't want her infant to contract pertussis. After reading responses from other non-vaccinating mothers--telling her to hold strong, to rest assured that breast milk would somehow make her baby immune from pertussis, one of the most devastatingly contagious diseases on the planet--this mother-who-vaccinates felt moved to post a response. 

She asked the mother of the newborn to reconsider getting her child the Dtap, and linked to Everlee's pertussis story here on this blog as an example of how an infant handles pertussis. Not only was the comment not approved by the woman who runs Modern Alternative Mama, but the mother also received an e-mail saying that the blog didn't allow commenters to use "scare tactics" and so the comment would be censored. After reading the e-mail myself, I was somewhat surprised--until I went to the blog's Facebook page and saw the anti-vax posts from the blog author. Typical stuff I encounter on a daily basis from the underbelly of the mercifully sparsely populated anti-vax world, more banal than the truly bizarre "Moms Who Vax Make Up Their Stories" conspiracy theories floating around. 

Still, I found myself stewing over this one.

In many ways, I am not surprised that we live in a world where the true story of a vaccine-preventable disease can be considered a "scare tactic." After all, we are still burdened by climate science skeptics and Creationists who believe the earth is 6,000 years old and that we hung out with our dino friends. But coming as it did in the midst of preparing a story from another mother whose life was changed by a vaccine preventable disease, I found this appellation--"scare tactic"--used to describe Everlee's story particularly distasteful, even for the anti-vax crowd. While serious side effects from vaccines are exceptionally rare, I would never look a parent, whose child had had a bad reaction to a shot, in the eye and say: your story, and your child, are a scare tactic, and therefore you do not deserve to be heard. I'm not certain how you can respond to any parent who is suffering in such a dismissive way and remain human. It doesn't necessarily mean you agree with their theories as to why their child became ill, or that you acknowledge that such reactions are common, but it means you have a basic level of compassion. 

Illness and death from vaccine-preventable disease, which are far, far more common and, unfortunately, on the rise, are not scare tactics. They are the true stories of fellow human beings who want to be heard and, even more important, who want to save other families the heartache they've suffered. More, the science is on their side. The facts are on their side. And I, as a parent, am deeply grateful for the work they do by keeping their wounds wide open in order that they might save lives, something those who criticize them have no interest in doing.