Parents PACK Personal Stories - Chickenpox

A peek into the world of unvaccinated families from the Public Health Department perspective

By: Julie Paoline, MA, Director of Communicable Disease Control and Prevention, Montgomery County Health Department

I never thought of chickenpox as a serious disease until I started working in public health. When I think back to when I had the disease as a child, I remember being itchy, restless and bored from staying home from school, but I didn’t think it was that bad. Eventually, I learned that I was lucky. I had an uncomplicated case of chickenpox, so I was left thinking that this was a disease with little to no consequences. Was I wrong!

Working in disease surveillance, I have learned the realities of chickenpox. The Centers for Disease Control and Prevention (CDC) reports that prior to 1995, 4 million people got chickenpox, 10,500 to 13,000 were hospitalized, and 100 to 150 died each year. I had no idea that this disease that appeared to be so mild to me caused morbidity and mortality of this magnitude.

Now thanks to the varicella vaccine, these numbers have decreased to the point that many people don’t know anyone who had chickenpox in a given year. Unfortunately, this also means that a number of people are still reluctant to immunize their children against chickenpox.

Concerns of the unvaccinated communities

Working for a local health department in Pennsylvania, I have heard many of the reasons that people choose to delay or forego the chickenpox vaccine, such as the unfounded ideas that vaccines cause autism or other developmental conditions, too many vaccines are given, chickenpox is not dangerous, or their child is not likely to get chickenpox.

My experience has taught me otherwise. Chickenpox still exists. In Montgomery County, Pennsylvania, alone, 129 cases were reported and investigated in 2008. By 2012, 50 cases were reported and required additional public health action. Montgomery County is only one of 67 counties in Pennsylvania. The disease is reported across the Commonwealth and pockets of unimmunized persons contribute to cases and outbreaks each year.

Not only does chickenpox still occur, it causes serious complications, such as dehydration, pneumonia, bleeding problems, infection or inflammation of the brain, bacterial infections of the skin, blood stream infections, toxic shock syndrome, bone infections and joint infections in some of the people who get chickenpox.

Living as an unvaccinated person in the community

In my experience, most unvaccinated people do not understand how their day-to-day life will change during a disease outbreak.

Once a setting is identified as having an outbreak, the health department must identify who could have been exposed and whether they are likely to be immune (either by vaccination or previous disease). It is important to recognize that chickenpox spreads very easily; therefore, a setting like an elementary school can mean a large number of exposed children and staff who have interacted with the infected person.

From the public health vantage point, exposure to chickenpox is defined as four hours in the vicinity of an infected person, although it is recognized that transmission may occur in less than four hours. So for children in an elementary school setting, exposure is virtually unavoidable.

Continuing with the example of an outbreak at a school, anyone who is determined to be at risk of developing disease, known as a “susceptible exposed person,” must either be vaccinated or kept out of school until 21 days after the onset of the last case of the outbreak. I have seen how frustrated parents get when the 21-day clock must be “reset” because a new case is identified. Depending upon the size of the outbreak, the actual length of time out of school can stretch to a couple of months until the last case is finally identified.

Whether the outbreak is first identified in a school or not, anyone determined to be susceptible must be quarantined. This means, not only being excluded from school, but also from activities, sports, groups, church, shopping or visiting with friends and family. Quarantine of susceptible individuals serves two purposes: First, the individuals must be protected from exposure to the disease, and second, because susceptible individuals are likely to also be infected if exposed, keeping them away from others helps to prevent the disease from spreading.

If you are the working parent of an unimmunized child who is quarantined, you may have to lose wages to stay home caring for your child or make alternative childcare arrangements. The social and economic costs of outbreaks are the silent burdens. People don’t think of these things when they are considering whether or not they should vaccinate. If there is a valid reason not to vaccinate, such as a medical condition, this is a possible scenario which you have no choice but to accept; however, vaccines are safe, so choosing not to immunize because of a theoretical concern must be realized for what it is – a choice to take a different risk. Parents who opt out must be prepared for and vigilant to the possibility of an outbreak.

By vaccinating yourself and your family, you not only reduce the risk of disease, complications and death, but you also protect your children from missing key moments of their childhood.

In Josh’s name

By: Bev Connelly

I recently joined Facebook. I resisted for a long time, but my daughter finally convinced me. She told me some of Josh’s friends were on there.

Josh's story

Josh was your typical 12-year-old. He had lots of friends in the 7th grade. He played football and baseball, and he was a Boy Scout. He liked joking around with his friends. He played hard when he played sports; he was competitive, for sure. He rarely complained, and he loved to laugh.

But, our world changed forever on April 13, 1996, when Josh died suddenly from chickenpox. I couldn’t believe that chickenpox could be that severe. I was one of seven kids, and we had all had chickenpox as children, and we knew lots of other people who had it too. No one had ever died.

My younger daughter, who was 10 at the time, had just gotten over the chickenpox. She had been miserable and itchy. But with Benadryl® and ice cream, we got her through it. Frankly, I had always felt my kids were lucky because they had made it to middle school without having chickenpox even though others had it throughout their elementary years. So, when Josh got chickenpox, we figured it would be more of the same — Benadryl, ice cream, and oatmeal baths. Unfortunately, that was not the case. Josh’s fever spiked and we took him to the doctor who told us that sometimes pneumonia could be a complication of chickenpox, but Josh’s lungs were clear. Later that night, he wasn’t feeling well; he had an upset stomach and was throwing up and then he started wheezing. The next thing we knew he had stopped breathing. After a call to 911, the ambulance crew and the doctors at the hospital tried to revive him, but were unsuccessful.

People told me later that the EMTs were so upset and that the doctor Josh saw the day before had to take some time off of work because he was so distraught over what happened. We were all in shock. A friend’s husband told us that a colleague of his during medical school had also died of complications from chickenpox, but until this happened, I never, ever thought such a thing could happen, especially to my strong and healthy son.

Josh’s gift

When Josh got chickenpox, the vaccine was new. His doctor was offering it when kids came in for their annual check-up. Josh’s check-up would have been in July. . . .

Sadly, the doctor told me that he had been having trouble convincing parents to get the vaccine for their children. I always believed in vaccines, so I would like to think that I would have gotten the vaccine when it was offered in July, but I never had the chance. When Josh died, the local newspaper ran a story about him. After that, the doctor said he had an easier time convincing people to get their child vaccinated. I wished so much that I still had Josh . . . that I still had that chance to make the decision about the chickenpox vaccine, but I knew, for us, it was too late and I took comfort in knowing that when people heard about Josh, they decided to protect their children from the same thing. It was like Josh’s gift — not only to me, but to others.

About a year and a half after Josh died, my brother took his then 1-year-old for vaccines in a nearby town. When the doctor brought up the chickenpox vaccine, he told my brother that the vaccine was important to get and that although he had not treated him, he knew about a local boy who had died from chickenpox the previous year. My brother told him that was his nephew; the doctor had no idea. Again, we were touched by the realization that Josh’s story continued to help others. 

Josh’s memory

Recently, I read about the chickenpox parties that some parents have to avoid getting their children vaccinated. These stories really made me think about Josh. Given my circumstances, getting the vaccine is a no-brainer. I agree with parents who want to research vaccines and make the best decision, but I don’t know why after doing the research, anyone would choose to expose their child to a disease — not just chickenpox but any disease — when they don’t have to. I just wouldn’t take the chance.

Even today, almost 16 years later, I still have moments when I really miss Josh, moments when I wonder what his life would have been, and moments when I wonder “what if.” What if I had noticed something else that would have warned us what was happening to him? What if the vaccine would have been available sooner? I’m afraid those questions will remain with me forever.

But one question that I had was recently answered. That brings me back to where I started: Facebook. When I finally joined, I found that my daughter was right; some of Josh’s friends were there. I had moved since Josh died, so I lost touch with many of the people who knew Josh, and I always wondered if any of them remembered him, especially his friends, the boys who he went to scouts with and played ball with. After all, they were only 12 at the time. I was so happy to find that they had not forgotten him. I found out that one of his best friends was a police officer in a nearby town and that he and his wife were expecting their first baby. He told me that he has always felt Josh watching over him. And a few weeks ago, I got the best gift ever when that friend called me, “I wanted to call and tell you our news; we just had the baby, and we’re naming him Joshua.”

Learn more about chickenpox and the vaccine that prevents it.

Reviewed by Paul A. Offit, MD on May 26, 2020

Materials in this section are updated as new information and vaccines become available. The Vaccine Education Center staff regularly reviews materials for accuracy.

You should not consider the information in this site to be specific, professional medical advice for your personal health or for your family's personal health. You should not use it to replace any relationship with a physician or other qualified healthcare professional. For medical concerns, including decisions about vaccinations, medications and other treatments, you should always consult your physician or, in serious cases, seek immediate assistance from emergency personnel.