Parents PACK Personal Stories – Measles
Measles outbreak: Perspective from a local health department
Roxann L. Bentz, RN, PHN III, Epidemiology Nurse Coordinator, Bucks County Department of Health, Pennsylvania
As a public health nurse, I typically spend my days investigating any one of Pennsylvania’s 73 reportable diseases that occur in our county. However, recently we had a measles outbreak. It was not a large outbreak. Indeed, it could have been worse, but even this small outbreak meant a complete disruption to the regular operation of the health department.
During an outbreak, local health departments take the lead in coordinating a response and protecting the public from further spread of disease. This typically means working with state lab personnel to coordinate testing of samples from people who might have the disease. Sometimes the health department staff has to get samples; other times we work with the doctors or hospitals that have the samples to make sure they are sent to the state lab. We also follow up with results of the testing and monitor anyone who is confirmed to have the illness. In addition, we spend a lot of our time communicating with healthcare providers, the public, the media and our colleagues at the state health department.
Lots of phone calls and letters
The recent measles outbreak meant making phone calls to numerous individuals who may have been exposed, including a family with an infant too young to have been immunized. Because the cases were introduced into the community by international students, we also notified all of the host families, including those with the confirmed cases and the organization that ran the program which sponsored them. Calls were made to school nurses and administrators, people with symptoms of measles, local physicians staff at offices where those with measles went for care, and state health department staff. Because some of the students had recently been on a field trip and others had traveled home by plane while contagious, state health department staff contacted health departments in other counties and states to alert them of possible measles exposures.
Because this outbreak occurred during the school year, informative letters were sent to parents in the schools with infected students. Media outlets were notified, and interview requests were scheduled in a timely manner with our medical director.
We also spent a significant amount of time speaking with people who were not sick, but who had heard about the outbreak and were worried that they had been exposed to or contracted measles.
Missed exams and proms
When a contagious disease is spreading through a community, the best way to protect unvaccinated individuals is to isolate them. Therefore, we worked with school nurses to exclude students, teachers or other staff who were not properly vaccinated.
Several of the students who had to be excluded were juniors and seniors who were in the process of taking final exams. Likewise, some of the students had to be excluded from attending their proms. Parents and students were upset because of the timing relative to these important events that could affect college acceptance and final grades or that could never be repeated. Needless to say, we responded to many phone calls from angry and upset parents of unvaccinated students.
Public health impact and partnerships with physicians
The time, manpower, upheaval and inconvenience caused by the measles outbreak was extraordinary — and stemmed from a situation that could have been prevented or at least minimized. Although the people who got measles had been vaccinated, their cases were very mild. In general, parents who immunized their children were not nearly as affected as those who chose not to vaccinate. Parents have the right to choose not to vaccinate, but they need to fully understand the complications and interruption to life activities that can occur when they make that choice.
Because measles is relatively rare, the physicians involved were unsure of how to diagnose and handle the cases. Unfortunately, this meant that they did not contact the health department in a timely manner, leading to an increase in geographic spread and the number of people who were exposed. Because of the success of vaccines, many vaccine-preventable diseases, including measles, have never been seen by some physicians, so it may be difficult to know how to proceed. However, it is important to recognize the health department as a resource for direction and help. Physicians must not only consider the individual patient, but also how quickly that person’s illness may be shared with others throughout the community; partnering with the health department early on can stem that spread.
From my perspective, I can say this outbreak was extremely time consuming and took valuable manpower away from a daily workload that continued to need our attention. In this day and age, when we have a measles vaccine, this outbreak didn’t have to happen at all.
Subacute sclerosing panencephalitis (SSPE): A rare complication of measles – Emmalee Parker’s story
Subacute sclerosing panencephalitis, or SSPE, is a rare complication of measles infections. Even though only about seven of every 1 million people with measles get this disease, for those families who are affected, the disease is devastating.
SSPE occurs when a defective form of the measles virus continues replicating in the nervous system. This persistent infection eventually leads to mental deterioration, loss of muscle control, seizures, muscle twitching, and most often, death. These symptoms can occur anywhere from one month to many years after a measles infection; the average onset occurs about seven years later, but has occurred as many as 27 years later.
While the introduction of the measles vaccine has decreased the occurrence of SSPE, the disease has not disappeared. Today in the U.S., SSPE occurs so infrequently that most healthcare providers have never seen it and, therefore, may not consider it. Unfortunately, in other countries where measles is more common and the vaccine may not be readily available, SSPE still occurs. And because international adoptions are common, sometimes the devastation of SSPE is felt by families in this country. We were recently introduced to two of those families:
Brian, Erica and Emmalee Parker
Brian and Erica Parker spent about a year and a half completing all of the paperwork and clearances necessary to bring home their new daughter, Emmalee, from India. During that time, they got reports about Emmalee and sent care packages to her. She was 2 1/2 years old when they finally brought her home. She weighed only 17 pounds, and they soon found that she had other health and behavior related concerns as well. As the Parkers took Emmalee to various healthcare providers and therapists, they were told that she had attention-deficit/hyperactivity disorder, or ADHD.
However, about five years after Emmalee was adopted, the Parkers noticed that she seemed to be losing her coordination. Emergency room physicians at The Children’s Hospital of Philadelphia were from India, and they immediately asked when Emmalee had had the measles. Recognizing the symptoms of the disorder, they were already considering SSPE as a possibility that was later confirmed by lab testing. Emmalee, they were told, was already in stage 2 of a disease with four stages. She would not likely recover. Brian and Erica did research to learn all that they could about SSPE and worked with doctors in attempts to stabilize Emmalee’s condition. Unfortunately, a few months later Emmalee’s condition worsened, and she slipped into a coma. About a month after her eighth birthday, she died.
As Brian and Erica learned, despite the fact that Emmalee had the measles vaccine in the orphanage in India, she didn’t get it until she was about 16 months old. The Parkers were told that it is likely that she got SSPE because she was exposed to measles before she was 1 year old.
Editor’s note: Update from Emmy’s Hope (April 2013)
After Emmalee’s passing in 2011, Brian and Erica Parker started a foundation, Emmy’s Hope, in honor of their daughter. Besides raising awareness about measles, SSPE and the safety of the MMR vaccine, Emmy’s Hope also helps provide immunizations to children in developing countries by donating to GAVI Alliance and the Red Cross Measles Initiative.
Because malnutrition is often a factor in the health of children waiting for adoption, the Parkers also advocate for the reduction of childhood mortality due to malnutrition. By donating to a Rhode Island based ready-to-use therapeutic foods (RUTF) company that manufactures high nutrition peanut paste products, the Parkers and Emmy’s Hope are able to help in the global fight to treat and reduce malnutrition in developing countries.
In recent communication with the Parkers, they stated their hope that more people will listen to public health officials about the importance of immunizations as well as understand the devastating effects of malnutrition on orphans in the developing world.
Subacute sclerosing panencephalitis (SSPE) – Jaxon’s Cure
Oscar and Paula Abalahin adopted Jaxon from the Philippines when he was about 1 1/2 years old. Captivated by his big brown eyes, they fell in love immediately. Unfortunately, when he was 5 years old, he started having seizures. For several months, doctors could not figure out what was causing them. His parents searched the Internet tirelessly looking for conditions with symptoms similar to his. They also looked back to the medical records they were given when he was adopted to see if anything could be causing his seizures — Jaxon had measles when he was 7 months old; his parents read about SSPE, saw similarities in the symptoms, and hoped that this condition was not causing Jaxon’s symptoms. Unfortunately, when doctors looked into their idea, their worst fears were confirmed — Jaxon had SSPE.
The Abalahin family worked with doctors and researched ways to stabilize Jaxon; the treatments helped him to survive for about two and a half years after his diagnosis. Jaxon’s family has pledged to find a cure for SSPE so that other children do not need to endure what Jaxon did.
Jaxon’s Cure is a nonprofit organization started by Jaxon’s family and friends to raise funds to study SSPE and learn how to cure it. You can learn more about Jaxon’s story and his family’s efforts at www.jaxonscure.org.
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