atypical

What It’s Like to Have Measles

Photo: Christopher Badzioch/Getty Images

In recent months, measles — a disease once effectively eradicated in the United States — has broken out in several regions across the country, including Brooklyn (where Mayor Bill de Blasio declared the disease a public health emergency), Washington state, and Michigan. Regions most affected have been those where immunization is low, a problem that’s happening worldwide; this year, the World Health Organization listed “vaccine hesitancy” as one of the top-ten threats to global health.

Most children, young adults, and middle-aged people haven’t experienced measles, as school-mandated vaccinations began in earnest in the 1970s, and the disease was functionally eliminated by the year 2000, says Paul A. Offit, a pediatrician at Children’s Hospital of Philadelphia, specializing in infectious diseases and vaccines. Of people born in the 1950s and ’60s, like he was, before the mandated vaccination era, Offit says, “We all had measles.”

What Offit remembers of the experience is what he says most children remember about it: “I remember being in bed for days. I remember thinking, would the spots ever go away? Would I be spotted for the rest of my life?” Offit was only 5 or 6 at the time, and thus remembers being glad to miss school, but he also describes the experience as “miserable,” and tells me the only way you got better was to wait. (There is no anti-viral medication which treats measles specifically.)

Now, at the hospital where he works, Offit is periodically called upon to share this strange generational wisdom. “When children come into our emergency department with fever and a rash, they ask people my age to come down and take a look, not just because we had measles, but because we really saw measles,” he says. “I can tell in 30 seconds whether somebody has measles. They’re photophobic, meaning they’re intolerant to light, so they [won’t look up at the lights]. They’re miserable.”

Soon, though, experts predict outbreaks like those in New York and Washington could be the “new normal,” in which case generational expertise like Offit’s may no longer be necessary. In late 2014 and early 2015, a measles outbreak attributed to Disneyland, in California, resulted in 147 cases in several states. Most of those patients were unvaccinated, though not all by choice. We spoke to Ariel Loop, whose 4-month-old son contracted measles in the Disneyland outbreak, about her experience.

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How did you learn your son had measles? Was that something you were worried about?
It was ironic, because we kept him at home for the first two and a half months. We made sure he got all of his vaccines before he went anywhere, we made sure that anyone who had contact with him — grandparents, family — they were all vaccinated. We were as protective of him as we reasonably could have been, without keeping him in a bubble for a year.

I’m a nurse, and I was more concerned about pertussis [whooping cough] and the flu, because he was a preemie. I hardly knew what measles was at that point, honestly. It wasn’t really something they taught us a lot about in nursing school, because it’s not something we see. I just didn’t think about it.

After his two-month vaccinations, we took him to Disneyland a couple of times. We got married there, we told everybody we were pregnant there, it’s been pretty [important to us]. We’re also in Los Angeles, so it’s kind of just like going to the park.

About two weeks later, I put him to bed, and noticed he was kind of rubbing his eyes. I just didn’t really think much of it. He wasn’t acting sick, I thought maybe he had allergies or something. I went to bed like, Huh, a little strange. I woke up the next morning — he was in a little co-sleeper next to our bed — and I put my hand on him, and he was super-hot. It was February, so it was still pretty chilly out. So I took off his pajamas, and he had spots on his chest.

We’d heard about measles in the news at that point, and it was the first thing I thought, but I was like, There’s no way. I’m just projecting, I’m a first-time mom, I’m just being crazy. But he had a bunch of spots on the back of his head, and I knew that was the classic sign — [the spots] usually start at the head and work their way down. I was still trying to tell myself I was crazy. His fever was about 102, and it was the first time he’d ever been sick, so I called the pediatrician. We gave him a room-temperature bath, and gave him some Tylenol, because at that point, they didn’t want him in their office.

Why?
Because it’s so contagious. It can stay in the air for two hours. It’s one of the most virulent diseases out there. So we just kept him at home for a couple of hours. I was trying to get his fever down, and I couldn’t get it down under 101-ish. That was concerning to me. So we called the pediatrician back, and said the spots are progressing. I started freaking out at that point.

We ended up taking him to the ER that afternoon. I called first, because I knew that measles was so contagious, and I didn’t want him sitting in a waiting room if it was measles. We got there, and they brought masks out to us, and took us in the back, right into a negative pressure room. It felt like they had hazmat on us. They took blood, gave him some more Tylenol, and just kept him comfortable.

Did the doctors know what it was right away?
Nobody there had ever seen measles. But his spots were getting worse. Fortunately he didn’t get too sick, all things considered. But he was sick. He coughed, it sounded awful. His eyes got pretty infected. The rash got worse. But thankfully he didn’t get super, super sick. We were able to go home that day, which meant being quarantined at home. The health department came a few days later and took some urine, because I guess the urine test is more accurate than the blood test. That was Sunday, and we didn’t find out it was measles for sure until Thursday, so our quarantine was pretty much done by then, because it’s four days.

Did you all have to stay home that whole time?
My husband stayed home with him. Fortunately I had my titers drawn for nursing school, so I knew I was immune, so the health department let me go to work. We couldn’t find my husband’s vaccination records, and we knew he’d been vaccinated, but he just stayed home with my son. I was doing my public-health rotation during all of this, for my bachelor’s, so it was good timing, I guess? Interesting timing.

So when did he start to get better, and what did that look like?
The spots got worse for two days — they got more blotchy, and worked down his body, and then they kind of faded in the order he got them. He still rubbed his eyes for weeks. We ended up following up with an ophthalmologist, and thankfully his eyes are okay. But I still have to be worried he’s going to get subacute sclerosing panencephalitis (SSPE) for the next several years. [SSPE is a very rare but fatal complication resulting from a measles infection acquired earlier in life, and generally 7 to 10 years later.] It’s a small chance, but it’s a little terrifying.

Are you angry? Or were you angry back then?
There was definitely some of that. At that point, I still didn’t understand how raging the anti-vaccine movement was. Another kind of ironic thing is that when I was pregnant, you know, you research everything, and you Google everything, and I’d been looking at some of the alternative vaccine schedules — like the ones that kind of spread it out. On paper, it seems like, “Okay, I’m getting it done, but it’s at a better pace, so it’s less likely he’ll get sick.” It seems very logical and very comforting, if you don’t know any better. I was trying to find any science behind it. Anything. But even Dr. Sears, who put out the most common one, he’s even said “It’s just common sense. There’s no science behind it.” And that, I was like, Mmmm. I’m not going to go with that.

I totally understand how a lot of people can get taken in. It’s really scary when it’s something you don’t know about. But that’s why we have people who spend their whole lives researching this stuff. That’s why I take my car to a mechanic, because I don’t know how to fix it.

There have been periods that have been frustrating. I feel like I did everything I could have done. Obviously, you can’t keep your kid home for a year until they can get their MMR. Within reason, I did everything I could have done, and it still wasn’t enough, so that was frustrating.

Did you worry at all about getting other people sick?
I was standing in the hospital thinking, if someone’s contagious for about four days on either side of the onset of fever and spots — because we’d just started going out more. We’d been to three restaurants in the few days before, we were at IKEA for hours. I had a lot of guilt over who I could have possibly exposed. I had to make a whole list of everywhere we went for the health department. I know we didn’t know, but it was like, Oh god.

It’s interesting that anti-vaxxers don’t seem to suffer from that guilt, when it’s a much more deliberate decision in their case than it was yours.

I know a lot of anti-vaxxers want their kids to get their natural immunity, and they’ll do pox parties, and expose kids, but then they’re also terrified of kids who’ve been vaccinated because they think the vaccines shed, and you can get the disease from the vaccines. So it’s kind of like, which is it? Is it no big deal, and you’re not terrified of it, or is it so scary you don’t want my vaccinated kids to give it to you?

I’m sure the majority of the people who aren’t vaccinating their kids aren’t the ones you see all over the internet, and the ones that show up with pitchforks, but I think a lot of them are scared and trying to do what’s best. Quite a few of my friends, most of whom were five or ten years older and had kids earlier — they either didn’t vaccinate, or had done the alternative schedules. This was before the Andrew Wakefield study was withdrawn. They felt so guilty. A couple people I know got their older kids vaccinated after this. Ten years ago, that was a different world. I understand that. I think a lot of people really clung to that study, even though it’s ridiculous and not true.

And then it’s hard to let go of when you’ve made decisions based on it. My friend was almost in tears apologizing to me, and I’m like, “You tried to keep your kid safe, and at the time, that seemed like a possible threat. I get it.” But I also don’t think autism is worse than dying.

What It’s Like to Have Measles