One of the hottest topics on our professional integrative pediatrics listserv lately has been vaccinations. Many families are asking hard questions about risks and benefits. One mother’s story is a tale that tells it all.
“‘Thimerosal in shots linked to autism increase” – “Polio resurfaces in Minnesota” – “Meningitis vaccine causes rare neurological disease” – “Pertussis on the rise in adolescents.” These are all headlines from various newspapers across the U.S. in 2005. It’s your 15 month-old son, he has a cousin with autism, and your pediatrician wants him to get his MMR (measles-mumps-rubella) vaccine today or you’re out of the practice. What do you do? You’re a general pediatrician and have just returned from making rounds at the hospital, where a four-month old is on a ventilator in the ICU after contracting pertussis (whooping cough). Your first patient in the office is a well two-month old whose parents are refusing all vaccinations for philosophical reasons. What do you do?
These are real-life scenarios playing themselves out all over the world today. The U.S vaccine policy, as formulated by the CDC and usually adopted by the AAP, is based on a public health bias, advocating protection of each and every one to insure protection for all. Is this “all for one” policy the right answer? For example, should all newborns be vaccinated with hepatitis B vaccine at birth? That is current policy. Yet newborns whose moms have tested hepatitis B negative are at no increased risk for contracting hepatitis B at that moment. We vaccinate them partly because we worry that we won’t be able to enforce vaccination at a critical adolescent time period. Is this the right answer for all babies?
As you may be able to tell, my own personal feelings are that an individualized risk-benefit decision needs to be made by every parent/guardian. Pediatricians need to make their own decisions about how best to care for these children. A recent statement in Pediatrics authored by the AAP’s Committee on Bioethics urges pediatricians to work with families to explore pros and cons without immediately dismissing such families from their practice. That would certainly be a step in the right direction.
A good friend of mine struggled with this very decision-making process not too long ago when one of her children contracted the very disease she avoided vaccinating against because her first child had a severe reaction to that vaccine. Read her story below, and consider – what would you do?
The ad at one of our local malls reads, “It’s always someone else’s baby until it happens to your own. Immunize by age 2”. Above the caption is an infant receiving oxygen through nasal tubes lying in a hospital bed. Every time I walk by I wonder if everyone immunized their children maybe I wouldn’t have had a infant of my own in and out of the hospital and on oxygen for four months because of complications related to a pertussis infection. Pertussis, or whopping cough, is the “P” in the DPT vaccine. At home, however, I look up at the shelves lined with books on childcare. Alongside what I consider to be the classics of my generation of mothers, such as The Baby Book (Sears & Sears, 1994), are titles such as Vaccines: Are They Really Safe and Effective? (Miller, 1999) Every time I re-read this book I wonder if my oldest child’s severe allergies and asthma are related to the numerous moderate to severe reactions he has had to vaccines, one of them being the pertussis vaccine. Those in favor of vaccines will tell you the devastating effects of the illness. Those who oppose mass immunization will tell you the devastating effects of the vaccines. My family has experienced both the effects of the disease and the vaccines first hand. There are no easy answers.
When Sam, my oldest, was 2 months old I showed up for his Well Baby Check-Up anticipating his first set of immunizations. It was a rite of passage, something I didn’t even question. Sam was the easiest baby, hardly ever cried, slept well, so I looked at this appointment as a bridge to his continued happiness and well-being. As we left the office that afternoon, I thought to myself, “That wasn’t so bad,” as Sam fell asleep and slept peacefully in his car seat. Once home, he woke up crying. As minutes grew to hours his crying showed no signs of letting up and intensified to the point of inconsolable siren like screams. I called my husband at the office. “Joe, something’s not right with Sam.,” I remember saying. In the back of my mind I kept reassuring myself that it was normal for babies to be fussy after their shots, and, as a first time mom I was more prone to over-react. Hearing Sam’s screams in the background, Joe thought it might be worth it if we put in a call to the doctor.
“How long has he been crying like that?” the on call nurse at the local children’s hospital asked.
“Almost three hours,” I replied, adding, “but I know it’s normal for them to be fussy after their shots.”
“That’s not fussy. He’s having a reaction to the vaccine. If he doesn’t stop in the next few minutes I want you to bring him to the nearest emergency room, quickly.” Sam did stop crying, as I was buckling him in his car seat to go to our local hospital. But, I was rattled. Had I done something that had caused him permanent harm? Or, would this incident be the first in many of the, “Remember when…” stories we would re-tell with smiles over nervous new parent ways?
As the months passed Sam began to show signs of more allergic reactions: eczema, frequent bouts with diarrhea, an anaphylactic reaction to a cookie, his leg swelling and more bouts of inconsolable screaming from subsequent immunizations. As the list of reactions grew I became obsessed with finding the answer to why these reactions were happening. Was it the vaccines? Was it Sam? Was it something we were doing as parents? Websites, books, articles. Doctors, acupuncturists, friends, family. All argued convincingly for the efficacy or lack of efficacy of immunizations.
Two years after Sam’s initial reaction to the pertussis vaccine, April of 2001, I was at the pediatrician’s office with then 2-month old Sophie. During my pregnancy I had numerous conversations with the various doctors in our group about the pros and cons of vaccinating. To varying degrees they all believed that Sophie should be fully vaccinated. Some doctor’s said they wouldn’t see our children if they weren’t fully vaccinated. I was terrified of making the wrong choice. I didn’t want to see Sophie suffer the way Sam had, especially knowing there is no concrete evidence showing a genetic predisposition to reactions. I made the decision to leave out the “P” in the DPT shot and not vaccinate her against pertussis, reasoning that pertussis was rare, she was low risk being at home and it was most serious in the first few months of life.
During those first few months I occasionally questioned my decision, but once she was 6 months old I was reassured that she was past the high-risk time for pertussis and its complications. I ultimately decided to pick and choose which vaccines the kids received, basing my decisions on the articles, books, and websites I had read and conversations with doctors, friends and family. Did they receive all of the required and recommended vaccines? No. Did they receive most of them? Yes.
Two years later, in June of 2003, Jake arrived. At 8 pounds 10 ounces Jake was not only my biggest baby, but my healthiest, as well. I breezed through my pregnancy, delivered him without any drugs, and spent the first few weeks of his life thinking how easy it was having three kids. I knew we would have to re-visit our vaccination debate at Jake’s 2-month check up, but from the time of Sophie’s 6-month check up I hadn’t questioned my decisions regarding vaccines.
At the end of July of 2003, when Jake was a little more than a month old, Sophie and I both caught what I thought was a cold. Runny nose, low-grade temperature, run of the mill summertime virus it seemed. When Jake started showing symptoms, I brought him to our pediatrician, knowing that fevers in young babies can be serious. He checked out okay and we headed home to recover. As the days passed into weeks, I showed no signs of getting better. If anything I was getting worse. Higher fever, coughing. I just couldn’t shake it. One of my acupuncturists told me I wasn’t getting enough rest, drinking enough water and eating well. I was run down and couldn’t fight it, so he said. A nurse at my internist’s office said it wasn’t worth coming in to see the doctor. There was nothing they could do.
Then Jake began to cough. At first his cough seemed like a nuisance, maybe the result of some nasal congestion, exactly what I thought my cough was. About two weeks after first showing symptoms, we were visiting some friends. As the older kids played, Jake was sleeping peacefully in his car seat. Until he started coughing. And coughing. And coughing. He turned red, then blue around the mouth. He couldn’t seem to catch his breath. My friend and I looked at each other and decided he didn’t look right. I called the doctor and asked if they could see Jake, for my piece of mind, because I was still convinced it was a nothing little cold.
When we got to the office, a doctor who had joined the pediatric group shortly before Sophie was born, saw Jake. After listening to Jake, she said that he was in fact wheezing and having difficulty moving air through his lungs. She hooked him up to a pulse/ox machine that measures the level of oxygen in your blood and it seemed normal, in the 90s.
After a breathing treatment to help with the wheezing we were getting ready to leave when Jake began to cough again. The doctor was still in the room, chit chatting with us. As Jake’s color changed from a healthy pink, to crimson red to blue, she called for the nurse to return with the pulse ox machine, quickly. This time we watched as Jake’s oxygen saturation levels fell through the 80s and into the 70s, dangerously low. As his coughing fit passed the numbers rebounded. My husband and I looked back and forth to each other than over to the doctor. As we talked, Jake began to fuss. She asked us to wait before soothing him and we watched as Jake’s oxygen levels plummeted once again. I was terrified. What was happening?
The doctor admitted that she wasn’t sure what was happening, but it was serious, serious enough for Jake to need to go to the hospital for some tests. One of the possibilities, a possibility that really didn’t seem possible for so many reasons, was pertussis. My mind was spinning: how could we have all gotten it? Isn’t it rare? Isn’t it life threatening in babies? And, then the realization, wasn’t the pertussis vaccine the one that Sam reacted severely to, the one we chose not to give to Sophie?
We were sent from the doctor’s office to Children’s Hospital after hours center at our local hospital. At the hospital Jake’s pulse ox rate was once again normal, as was his chest x-ray. We would have to wait three to five days for the results of the pertussis test, but were assured that the chances were remote that he, and Sophie and I, could all have pertussis. It was just a precaution.
Over the next several days, no one slept very much, not just from worry, but from the incessant cough. I watched as Sophie would cough so hard she would vomit, three, four, five times a day and night. I watched as Jake would cough gasp for breath seemingly every hour or two, around the clock. Neither of them would eat.
I brought Jake back to the doctor a few days later, in tears. We were still waiting for the results of the pertussis test. He wouldn’t eat, was miserable, and obviously having difficulty breathing. We watched as Jake’s pulse ox levels continued to fluctuate wildly, and listened as he took raspy, labored breaths. I wanted to do something, anything to make my baby better.
The calls came later that day, one from the hospital confirming that Jake, and by default Sophie and I, had pertussis, and another from the local health department. Not only was everyone concerned about the actual infection and its effects on all of us, especially Jake, but now there was a concern about how many other people we had come in contact with that could potentially be infected. The woman from the health department explained that no fewer than 12 cases of pertussis had been reported that summer, when they normally saw none. In addition, they were trying to track who was getting the disease, teenagers and adults whose immunity had worn off, which was expected, or unvaccinated children. Our family had both, I reluctantly told her.
“What are the chances of that,” she asked. Yeah, I thought to myself, what are the chances?
The next 3 months were filled with coughing fits, vomiting, oxygen tanks and more doctors and hospital visits than I care to remember. I tried hard not to think about the statistics about newborns who become infected with pertussis. Many of them die.
At Jake’s 4 month check up one of the physician’s assistants asked me why I had not immunized the kids against pertussis. The question didn’t bother me. The disclaimer, “Not to make you feel bad,” rattled me. The problem was I didn’t feel bad. That’s not to say I did have days when I wondered why this was happened or felt badly that we were all so sick. Did I question my decision? Yes. Did I feel badly? No.
Today, when I walk by the ad at our local mall or glance at the books on vaccines lining my book shelves, I smile. We’re all doing okay. Sam is a precocious 5.5-year old who writes his thoughts in his notebook every day, just because he can. Sophie is a 3.5-year old ball of fire who would choose shorts and dirty t-shirts any day over dresses. At 14 months, exactly a year after the pertussis diagnosis, Jake defines the term “bouncing baby boy”. I made my decisions regarding vaccinations and continue to make them based on what I have come to know about my individual children, all the literature I read on vaccines, conversations I have with friends and family including many physicians, and most of all hope, wanting nothing but the best for my children. I’m learning to make peace with the notion that inherent in the answers to the questions I ask are often more questions.
(note: all names have been changed for obvious reasons)