HEALTHWORLD

Measles Devastates Families, Challenges Doctors

The most recent measles outbreak ― the worst in the U.S. since 1992 ― may be over. But the impact of the disease, whether from this outbreak or previous ones, is not.

Here are five stories about how measles has directly affected parents, children, and doctors ― sometimes with devastating results.

Loss of a Child

When Oscar and Paula Abalahin of Port Orchard, WA, adopted their son Jaxon from the Philippines at the age of 18 months, his medical paperwork said he had the measles when he was 7 months old. At the time, he had been too young to get the measles, mumps, and rubella (MMR) vaccine given to children when they turn 1.

To the couple, it seemed like a minor detail in their boy’s life, especially once he came home and never had any health issues.

“Everything always checked out fine at his regular doctor’s visits, and we never even thought about the measles. He appeared to have recovered fully from it, so we thought he was good,” Oscar Abalahin says. “He was a happy, vibrant, smart, athletic boy that we thought had such potential.”

So, when Jaxon suddenly had seizures at the age of 5, neither his parents nor his doctors realized it could be complications of the measles. Everyone was baffled as the kindergartener was admitted to the hospital and within 2 weeks could not stand, walk, talk, or even swallow.

It was 2006, and measles outbreaks weren’t yet affecting the U.S. The family says it took doctors at two hospitals 4 months to confirm Jaxon had subacute sclerosing panencephalitis (SSPE), a complication of measles. The brain inflammation, which is almost always deadly, typically lays dormant 6 to 8 years and develops long after a child appears to have fully recovered from the measles.

Once he was diagnosed, Jaxon received medicine that stopped his symptoms from getting worse, but he was already very sick. He was eventually sent home but still couldn’t walk or talk. He was often bedridden and required 24/7 care. His mother quit her job to be home with him. About 2 years later, Jaxon died at the age of 8.

“It was heart-wrenching,” his mother, Paula Abalahin, says through tears. “I would have done anything to help him still be here with us.”

Years later, Jaxon’s parents say they remain deeply affected by the loss of their child.

The couple, who went on to adopt two more children from the Philippines after Jaxon’s death, now run an organization committed to encouraging parents to vaccinate and educating them about the risks if they don’t.

“Measles is preventable, and if you aren’t immunizing against it, you are risking your child’s life and the lives of other children like our son who can’t get immunized for medical reasons or because they aren’t old enough,” Oscar Abalahin says.

New Challenges for Doctors in the Middle of an Outbreak

Marcia Sparling, MD, works in a multispecialty group in Clark County, WA. There have been 86 confirmed measles cases in Washington state in 2019.

Sparling and her colleagues have treated several young patients with measles at their practice’s five locations this year. It forced them take another look at how they protect other patients from the measles.

“It was very challenging. Because measles and many other serious illnesses that we immunize against have historically been gone, most buildings don’t have side entrances anymore for children with communicable illnesses,” she says. “So we had to train people in our call centers to ask the right questions to try to identify patients at risk for the illness before they came in. Then we were trying to meet possible measles cases outside the building so we could mask them and whisk them into an exam room that was the most isolated.”

The Washington state doctor says medical management became even more complicated when patients with possible cases of measles ignored requests to meet them outside, and when patients came into the lobby before they were identified as a measles risk. Measles is so contagious, it can live in the air for 2 hours after an infected person coughs or sneezes, and an infected person can spread it 4 days before and after a rash even appears.

“We would have to close the waiting room and contact everyone who had been in there over several hours because it’s so contagious,” Sparling says. “That involved hours of phone calls. And if people who had been in the lobby weren’t fully immunized, then we wanted them to stay in isolation for a period of time.”

Since the outbreaks in her community ended, Sparling says her practice has focused more on vaccination education ― even working with obstetricians in their area so parents hear the message from more than one source.

“We are focusing on talking to parents about why and how immunization leverages a child’s natural immune response using the body’s own intelligence,” Sparling says. “The body meets a germ, in the form of a vaccine, and builds immunity. That is a natural process, and that message is helping some families.”

Medically Vulnerable Children Face Potentially Life-Threatening Risks

The CDC says immunization rates have to be between 92% and 95% to create herd immunity, which means if medical reasons prevent you from getting a vaccine, the fact that the vast majority of people around you have generally grants you immunity under that community umbrella of protection. But, with that no longer a guarantee amid the anti-vaccination movement, families of the most medically vulnerable, who’ve long relied on community protection, are having to make difficult choices.

Jean Nylund of Milwaukee, WI, is one of them. Her daughter Sara was diagnosed with hepatoblastoma (liver cancer) at 10 months old and received a liver transplant 8 months later in 2015. She had to wait 6 months after her cancer treatment to restart vaccinations. But the MMR vaccine is one that many liver transplant recipients like her have historically not been allowed to get out of concerns that their weakened immune system will cause them to get the illness the vaccine is trying to prevent.

“Sara’s on immunosuppression medication to prevent her body from rejecting her new liver. A common childhood virus can, and has, landed her in the hospital for several days. More serious illnesses, such as measles and chickenpox, can kill her or cause lifelong issues,” Nylund says.

Worried her daughter could no longer rely on herd immunity as measles cases have grown in recent years, she and many other liver transplant patients and their families have decided to give their transplanted children the MMR vaccine.

“The measles outbreaks have absolutely impacted my decision,” Nylund says. “It’s terrifying that some people are so arrogant to think they know more than those who have dedicated their lives to fighting diseases.”

Nyland’s daughter got one MMR vaccine in January 2019 under medical supervision and tolerated it. Still, Nyland knows many other young transplant recipients whose doctors haven’t allowed them to take that step.

“It’s terrifying and infuriating to know that some people think my child, and others like her, are unworthy of society’s responsibility to help keep them safe,” Nylund says. “If parents choose to be negligent and not vaccinate their children, they are not only exposing their children to potential harm, but the community at large.”

Care Practices Changing

Jennifer M. Vittorio, MD, a pediatric transplant hepatologist at New York-Presbyterian/Columbia University Irving Medical Center in New York City, says measles outbreaks have changed a policy at her hospital involving young patients getting a liver transplant before the age of 1.

“Traditionally, most patients don’t receive MMR until 1 year of age, unless it’s for international travel after 6 months,” Vittorio says.

Now, however, they recommend potential transplant patients get the vaccine at least a month before the procedure.

“We never examined the idea of doing this before the age of 1 before. But, we are in an area seeing an outbreak, and a lot of our patients live in these communities, so we are more cognizant of that now. We aren’t seeing any untoward side effects, and we find the advantages far outweigh the risks.”

Brian Long, MD, a pediatrician at Children’s Medical Associates of Northern Virginia, says the rise in measles cases has prompted his practice to recommend changes when it comes to the timing of the second MMR dose. The CDC has long recommended the second dose be given between the ages of 4 and 6, although it says children can receive it earlier as long as it’s been 28 days since the first dose.

“There has always been flexibility with the measles vaccine, so early this spring, as some of the outbreaks were increasing, we were talking as a practice about how to respond,” Long says. “After consulting with the CDC, our practice started recommending the second MMR routinely at the 18-month wellness visit now.”

The CDC says two doses of the measles vaccine are 97% effective at preventing the illness. One dose is about 93% effective. Long says the most of his practice’s patients are following through on the recommendation to get the second vaccine early because they want that extra protection for their children. He and his wife took this step with their own 2-year-old too.

“By and large, the reaction from parents we talk to is yes, absolutely, let’s do this,” Long says. “There is a lot of awareness of the measles outbreaks, and parents are realizing that presents much more of a threat than getting a vaccine their child would have gotten anyway, especially when there is no increased risk if we give it earlier than the age of 4.”

“It’s really sad and disheartening that it’s come to this,” he says. “People who choose not to vaccinate are making decisions they think are protecting their kids, but they are misguided and putting their children and many other children at an unnecessary and potentially deadly risk. Treatment relies on prevention because this is a viral illness, so there are not a lot of good treatments once it develops.”

Living With the Long-Term Impacts of Measles

Ariel Loop understands what it’s like when your child gets the measles and there’s nothing you can do to help. Her son Mobius had the viral illness when he was 4 months old after a visit to a California theme park in 2015 that the CDC says was affected by a measles outbreak.

She says she and her husband were following the CDC’s recommended vaccination schedule for the first child, so he hadn’t yet gotten his first MMR vaccine. But he did have his 2-month shots, and the couple figured herd immunity ― and the fact that they are both fully vaccinated ― made it safe to visit an outdoor theme park. Loop says they turned out to be very wrong. Mobius was diagnosed with measles about a week and a half later. The incubation period for the viral illness is 10-12 days.

“We were all in disbelief. He is my first child, and it was his first time ever being sick, and it was super scary,” Loop says. “He had a terrible cough that sounded like he had been smoking. It was a terrible noise from a tiny little baby. He was so uncomfortable and wriggling a lot, and there wasn’t anything you can do since it’s viral.”

Trying to keep her child comfortable was very difficult, Loop says. He had a painful head-to-toe measles rash for 2 weeks and kept rubbing his eyes, which Loops says clearly hurt him. That made her more anxious because measles carries a risk of blindness.

On top of that, her local public health department went to their house to interview them and piece together what public spaces they had visited with Mobius before realizing he was infected. It then put out a community alert detailing those stores and restaurants so people who weren’t vaccinated would know they, too, were now at risk of getting measles.

“We adhered to the quarantine, of course, once we knew he was sick. But we didn’t know we were contagious or that he was even sick for those 4 days prior to his spots appearing. So we went to all these places not knowing we were spreading a risk to others, and that’s a terrible feeling,” Loop says.

Mobius’ rash and cough improved after 2 weeks, and though the little boy just celebrated his 5th birthday and hasn’t had any adverse health problems since, he won’t be cleared from the long-term risk of brain inflammation until he’s 8 years old.

“I try not to dwell on it, but I can’t help but wonder and worry,” Loop says. “One morning he will have trouble waking up or he will get sick and I think, is something happening? Is this the start of neurological problems?”

This experience has turned Loop into a fierce vaccination advocate. She’s testified before the California legislature against personal belief exemptions for vaccines and speaks out to urge parents to turn to science, not social media, when making vaccination decisions.

That’s a message the American Academy of Pediatrics pushes, too. Earlier this year, it called on major tech companies, like Google, Facebook, YouTube, and Pinterest, to step up efforts to combat vaccine misinformation online. Scientific studies remain united in their findings that there is no link or increased risk of autism after MMR vaccinations. That includes a study released in April 2019 by the American College of Physicians that examined 10 years of data on all children born in Denmark and reconfirmed there is no connection between the two.

“I think most people not vaccinating are scared and don’t have the right, scientific information, so it’s become very important to me to advocate about this and tell our story,” Loop says. “We’ve all grown up not seeing this childhood disease because vaccinations work. So it’s really easy to lose sight of how many people die from measles every year worldwide. Measles can kill you, so why would you risk your child’s life and the lives of others when it is preventable?”

Sources

Oscar and Paula Abalahin, Port Orchard, WA.

Ariel Loop, Pasadena, CA.

Brian Long, MD, Children’s Medical Associates, Fairfax, VA.

Jean Nylund, Milwaukee, WI.

Marcia Sparling, MD, Vancouver Clinic, Vancouver, WA.

Jennifer M. Vittorio, MD, New York-Presbyterian/Columbia University Irving Medical Center, New York City.

Jaxonscure.org.

Annals of Internal Medicine: “Measles, Mumps, Rubella Vaccination and Autism: A Nationwide Cohort Study.”

Clinical and Experimental Vaccine Research: “Vaccination strategies in patients with solid organ transplant: evidences and future perspective.”

Survey of Ophthalmology: “Measles blindness.”

American Academy of Pediatricians: “AAP Urges Major Technology Companies to Combat Vaccine Misinformation Online.”

HHS.gov: “With End of New York Outbreak, United States Keeps Measles Elimination Status.”

National Institute of Neurological Disorders and Stroke: “Subacute Sclerosing Panencephalitis Information Page.”

CDC: “Measles,”http://www.medscape.com/”Measles Cases and Outbreaks,”http://www.medscape.com/”Measles History/Measles Elimination,”http://www.medscape.com/”Subacute Sclerosing Panencephalitis Surveillance ― United States,”http://www.medscape.com/”Morbidity and Mortality Weekly Report, Oct. 7. 2016 and Feb. 20, 2015,”http://www.medscape.com/”Recommended Child and Adolescent Immunization Schedule for ages 18 or younger, United States, 2019,”http://www.medscape.com/”Transmission of measles,”http://www.medscape.com/”Measles, Mumps and Rubella: What everyone should know,”http://www.medscape.com/”Questions about Measles.”

Washington State Department of Health: “Measles 2019.”




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