This op-ed by Ariel Loop appeared in SELF. Read the full story here.

Photo courtesy of Ariel Loop.

Disneyland has always been a special place for me and my husband, Chris. We got married there and we announced both of our pregnancies there. As we’re residents of Pasadena, California, Disneyland isn’t far away and it’s not uncommon for people to get annual passes. For us, a trip to Disneyland is kind of like going to the local park for other people.

During my pregnancy with my son Mobius, I regularly went to Disneyland and walked the park. So it felt inevitable that we would take him there after he was born. Chris and I waited a while to do that, though, and we did everything during Mobius’s first few months of life that we could to keep him safe. We didn’t take him out until a few weeks after his two-month vaccines, and we made sure everyone who was in contact with him before then was healthy and up-to-date on their vaccinations. I felt like we were doing everything within reason to keep him safe.

Once Mobius had his two-month shots, we decided to take him to Disneyland. I knew what his two-month shots protected against, and I wasn’t under any illusion that they would protect him against measles. But I also didn’t think that was something we needed to worry about. At the time I was more concerned with things like whooping cough than anything. And Mobius loved the park. He looked at the lights and we took family photos. We loved getting to introduce him to a place that held so much meaning for our family.

We made another trip to Disneyland with Mobius when he was four months old and it was a great time. Measles outbreaks were in the news about two weeks before our visit, including measles cases linked to Disneyland. However, by the time we went there were no reports I was aware of [about] current transmissions at the park. I asked my pediatrician about the measles risk before we went and we were told that it was just as much a risk there as it was anywhere at that point because it’s so contagious. There was technically a measles risk to take Mobius even to the local supermarket, I remember being told. My thought was that he was about as protected as possible while out in the wild without an N95 mask. Unfortunately, he was still exposed to measles during our visit—we just didn’t know it yet.

Two weeks later Mobius became sick for the first time ever. On February 1, 2015, I reached for him in the morning and noticed he felt really warm. I was immediately concerned and I noticed that he had a few spots on his chest, kind of like bug bites. More than 100 people were infected in the Disneyland measles outbreak which spanned from December 2014 to February 2015, and I had learned to check the back of the neck for spots. So I did.

Mobius had a bunch of spots there. I had a minor freak-out and worried that my baby had measles too, but I convinced myself that I was being a paranoid first-time mom. This was the first time he was sick, after all. It couldn’t be measles…could it?

He had a fever of 102 degrees Fahrenheit, so I called the pediatrician’s office. They asked us not to come in, just in case Mobius did have measles. They told us to monitor his temperature, try to relieve his discomfort with Tylenol, make sure he was breathing okay, and to go to the ER if things got worse. So I did that while trying to keep him comfortable. I was initially scared when I couldn’t keep his fever down, and that turned into a fear of the unknown of what was making my child sick. I’m a registered nurse, but I still felt nervous.
Mobius’s eyes started bothering him and he kept rubbing them. He also developed a cough that sounded like a bad smoker’s hack. His spots were starting to get worse. Chris and I called our local ER at that point. Thankfully we didn’t have to sit in the waiting room, where I knew there was a risk of us infecting other people. They went full hazmat on us and quarantined us and Mobius as soon as we arrived.

While I wanted to get Mobius checked out, I was still convinced that there was no way that my baby had measles. This was 2015 after all. From our conversations with the staff, it seemed like no one working with us had ever even seen measles cases before. It seemed to me like none of the doctors were convinced that the test results would come back positive.

We were eventually sent home and quarantined while we waited for the results. At the time I was getting an additional nursing certification and I had recently had my titers tested, which determine your antibodies. Since I had proof that I was vaccinated against measles, I was able to come and go. Chris couldn’t find proof of his vaccination, so he and Mobius were officially quarantined at home. I felt bad leaving home and I stayed there a fair amount, but I still needed to go to class. Ironically I was in a public health class when I got a call from the doctor four days after our ER visit: Mobius officially had measles, an illness that there is no specific antiviral therapy for.

I was stunned and I had a mixed reaction to the news. In a way I was glad that we knew what was wrong with my baby. But I also was worried about what that meant for him.

Full disclosure: Even though I’m a nurse, I didn’t fully understand at the time how dangerous measles can be. I didn’t know you could die from it, and I wasn’t fully aware of all of the possible complications. Yes, I’m a nurse, but I don’t really remember it being addressed much in my nursing school curriculum because it wasn’t something that medical professionals saw much in the field, if at all. For example, only 55 cases happened in the entire U.S. in 2012, and there were 187 cases in 2013. There were 667 measles cases in 2014, but part of that was due to the Disneyland outbreak.

Eventually Mobius started getting better. Our pediatrician found some evidence that vitamin A can help lower the risk of inflammation of the brain (known as encephalitis) and eye damage in kids with measles, as well as help mitigate other side effects, so we put Mobius on it. His spots got worse for two or three days and then started to get better. I was still stunned at this point. How had this happened to us?

About a week after I first noticed his spots, Mobius still had a huge cough and an eye infection, but was slowly getting better. I learned about subacute sclerosing panencephalitis (SSPE) around this time, which terrified me. It’s a rare form of chronic progressive brain inflammation caused by the measles virus and there can be a period of six to eight years after a child is infected with measles before they develop neurological symptoms like memory loss, changes in behavior, uncontrollable jerking movements, and seizures. People can lose the ability to walk, fall into a coma, and then be in a persistent vegetative state. I’ve spent four years being on edge, worrying about SSPE. I’ve tried not to be paranoid about it because you can’t live your life that way, but it’s still scary.

Mobius is about to start kindergarten, and he doesn’t seem to have any lingering side effects from measles. In fact he’s a brilliant kid, and he’s so excited to start school. I’ve had a second child, and we kept him home as much as we could when he was little too. But with two kids it’s tough. There are doctors’ appointments to go to and groceries that need to be bought. It’s scary that we can no longer rely on herd immunity, and I had a fear this time around that my second son would also contract measles or another serious illness.

When Mobius contracted measles I didn’t understand that anti-vax sentiments were still such a thing. I was in my safe little bubble and didn’t realize that other people still felt this way. Now I’ve gone back and forth between being angry and sad about that. If more children were vaccinated it’s unlikely that we would have had to deal with measles in the first place.

I ended up testifying for a bill called SB-277 that was passed in 2015 to get rid of personal-belief vaccine exemptions in California. That was a wake-up call. I was in the room with the other side and heard people listing off completely unfounded claims about vaccinations, like that they cause autism or SIDS. (There’s no research to support this, and you can read about it on the CDC’s website.)
I want people to understand that measles can kill you or permanently disable you, and that you can still die from measles years after you contract it. In my opinion, I think the majority of people who don’t vaccinate their kids are just trying to do what’s best for their children and just don’t have the right information.

I’m thankful that my son seems to be okay and is thriving, even. But I know that’s not the case for everyone—and I still worry about what could happen in the future.

Ariel Loop is a registered nurse who lives in Pasadena, California, with her husband and two kids, Mobius, age four, and Penrose, age two.