Kathryn Riffenburg decided on a closed casket for her baby’s funeral.
She didn’t want her family to see what whooping cough, her son’s first illness, had done to 9-week-old Brady Alcaide. The nearly forgotten disease, which has in recent years afflicted thousands of Americans, left Brady’s tiny body swollen and unrecognizable.
So his mother dressed him in a white suit and hat and tucked him into a tiny white casket. Brady’s burial came just four weeks after his first laugh – inspired by her version of I’m a Little Teapot – and two weeks after his family learned that he had contracted a vaccine-preventable illness.
“It just seemed like it was impossible,” says Riffenburg, 31, of Chicopee, Mass. “It felt like we were dropped in The Wizard of Oz. We went from sitting in the hospital day by day, waiting for him to get better for almost two weeks, to doctors telling us we had a 50/50 chance he was going to make it.”
The mother, who was inoculated years before giving birth to Brady, later learned that she could have gotten a booster shot during her pregnancy that likely would have saved Brady’s life. Although Riffenburg didn’t know to get revaccinated, people actively choosing not to are helping diseases once largely relegated to the pages of history books – including measles – make a comeback in cities across the nation, according to the Centers for Disease Control and Prevention.
Recent measles outbreaks in New York, California and Texas are examples of what could happen on a larger scale if vaccination rates dropped, says Anne Schuchat, the CDC’s director of immunizations and respiratory diseases. Officials declared measles, which causes itchy rashes and fevers, eradicated in the United States in 2000. Yet this year, the disease is on track to infect three times as many people as in 2009. That’s because in most cases people who have not been vaccinated are getting infected by others traveling into the United States. Then, Schuchat says, the infected spread it in their communities.
The 189 cases of measles in the U.S. last year is small compared with the 530,000 cases the country used to see on average each year in the 20th century. But, the disease – which started to wane when a vaccine was introduced in 1967 – is one of the most contagious in the world and could quickly go from sporadic nuisance to widespread killer.
Measles kills about once in every 1,000 cases. As cases mount, so does the risk. “We really don’t want a child to die from measles, but it’s almost inevitable,” says Schuchat. “Major resurgences of diseases can sneak up on us.”
Vaccination rates against most diseases are about 90%. Fewer than 1% of Americans forgo all vaccinations, Schuchat says. Even so, in some states the anti-vaccine movement, aided by religious and philosophical state exemptions, is growing, says Paul Offit, chief of infectious diseases at Children’s Hospital of Philadelphia. He points to states like Idaho, Illinois, Michigan, Oregon and Vermont – where more than 4.5% of kindergartners last year were unvaccinated for non-medical reasons – as examples of potential hot spots. Such states’ rates are four times the national average and illustrate a trend among select groups.
“People assume this will never happen to them until it happens to them,” Offit says. “It’s a shame that’s the way we have to learn the lesson. There’s a human price for that lesson.”
The most vulnerable are infants who may be too young to be vaccinated, children with compromised immune systems and others who may be unable to be vaccinated for medical reasons, scientists say.
In communities across the nation, Americans of all stripes are making dangerous decisions to reschedule or forgo immunization, says Alan Hinman, a scientist who sits on the scientific advisory board of Voices for Vaccines, which supports and advocates for on-time vaccinations.
The anti-vaccination movement has picked up steam in the past decade with support from celebrities such as actress Jenny McCarthy, actor Aidan Quinn and reality TV star Kristin Cavallari, who last month said not vaccinating was “the best decision” for her children. Many continue to believe the debunked idea that vaccines cause autism, while others don’t trust the federal government or the pharmaceutical companies responsible for these vaccines.
DISEASE CAN STRIKE ANYWHERE
Riffenburg hopes her family’s experience will serve as a wake-up call. At first, Brady seemed to have a simple cold. As his symptoms worsened, Riffenburg and her fiancé, Jonathan Alcaide, took him to the hospital, where doctors suspected he had whooping cough.
Two weeks later, Brady stopped breathing. His brain was without oxygen for some time, and he was put on life support, where Riffenburg said the horrific effects of the disease made her child become unrecognizable. A day later, she made the excruciating decision to take him off machines. The child died while cradled in her arms.
“I hope Brady has saved babies and protected them because we have spread his story,” RIffenburg says.
Since then, Riffenburg has made sure that her fiancé and her two daughters, now 7 and 10, get all of their booster shots. She was also inoculated while pregnant with her now 1-year-old son, Jaxon. And she insisted everyone – including doctors, family members and even the hospital photographer – got booster shots before they came near Jaxon.
It is not clear where Brady contracted whooping cough. Schuchat says that is precisely why communities must maintain high vaccination rates. Many might not know they are carrying a disease but can still be contagious and pass it on before symptoms arrive.
“It doesn’t have to be on an airplane or at an airport. It could be at a grocery store or the concert you went to,” Schuchat says.
During a 2008 measles outbreak in San Diego, CDC officials were shocked to find school districts where one in five children were not vaccinated against the disease, she says.
Last year, California had the largest number of unprotected kindergartners not vaccinated for their parents’ philosophical reasons: 14,921. This year, 49 cases of measles had been reported by March. The state had four cases by that time last year.
‘WE CRIED FOR A LONG TIME’
As cases of these diseases flare and create headlines, parents whose children have suffered are pushing back.
Jeremiah Mitchell, 10, plays Xbox with no hands, writes with a pencil strapped to what remains of his arms and prefers eating pizza because it’s one of the few foods he can hold.
Four years ago, doctors working to rid his body of meningitis amputated both his arms and legs as well as parts of his eyelids, jaw and ears. At the time, Jeremiah, then 6, was a kindergartner in Oologah-Talala Public Schools in Oklahoma. An outbreak of meningitis in the school system killed two children and infected five others, including Jeremiah.
In 12 hours, Jeremiah went from being a child who loved climbing trees and riding his bicycle in the mud to being in a coma, says his mother, Michaela Mitchell, 42, of Tulsa. He spent 14 days unconscious in the hospital as parts of his body became blackened and burned-looking from the disease.
“He came out with all his limbs cut off and wrapped up like a mummy – I fainted,” Mitchell says. “We cried for a long time.”
Jeremiah wasn’t vaccinated against meningitis because at his age his school didn’t require it, Mitchell says. CDC suggests all 11- or 12-year-olds get the vaccine and receive a booster shot at 16. And though his family did everything according to medical recommendations, Jeremiah was exposed because someone brought the disease into their community.
Now Mitchell, who takes care of her son full time, and Jeremiah, who faces more reconstructive surgeries, work with Meningitis Angels, a non-profit that supports families affected by bacterial meningitis and advocates for vaccinations.
Other organizations including the National Meningitis Association, Every Child By Two, and PKIDs combine personal stories and scientific evidence to encourage vaccinations.
From the medical side of the equation, some physicians have resorted to their own defenses to protect their patients from those who won’t vaccinate.
Doctors at Olde Towne Pediatrics in Manassas, Va., won’t take new patients if the parents don’t plan to vaccinate their children. It’s not clear how many other physicians do the same, as experts say no comprehensive studies of the practice have been done.
“We don’t want to put our patients at risk because people for their own personal reasons don’t want to vaccinate,” said Anastasia Williams, a managing partner of the practice who has been a pediatrician for 15 years. “We are doing our due diligence to protect our children who wait in our waiting room.”
Several states have also worked to make getting an exemption tougher.
In Colorado, where 4% of kindergartners last year didn’t have their shots for non-medical reasons, a proposed bill sponsored by State Rep. Dan Pabon, a Democrat from Denver, would require parents to get a doctor’s note or watch a video about risks before opting out of vaccines.
Such measures offend Sarah Pope, a Tampa mother of three, and Shane Ellison, a father of three in Los Angeles. They both decided against vaccinating their kids because they fear the potential side effects.
In 2006, all three of Pope’s children – now 9, 11 and 15 – contracted whooping cough, the same disease that killed Brady. Seven years earlier, Pope had decided against vaccinating any of her children. After seven weeks of coughing, and with treatment by a holistic doctor and natural supplements, all three recovered without complications, she says.
“I wasn’t scared by it,” says Pope, 49, who runs The Healthy Home Economist, a healthy living website and blogs about vaccines. “People only see the bad with infectious diseases. But infectious diseases do help children strengthen their bodies.”
Pope and Ellison say it is unfair to pressure parents into using vaccines that aren’t 100% effective. However, doctors note that all drugs – even aspirin – have risks, and none is 100% effective.
High vaccination rates can protect even unvaccinated people by lowering the level of infectious disease in the community, a phenomenon known as herd immunity, says Hinman, a senior public health scientist at the Task Force for Global Health. The more people who are vaccinated, the less likely anyone in that community will be infected.
Though vaccines are considered safe, Schuchat points out that they can cause reactions in some children, which in rare cases can be serious. But one of the most publicized fears of the anti-vaccine movement – that they cause autism – has been debunked by dozens of studies that have found no link.
Even so, parents like Ellison, 39, don’t buy it, and he points out that he comes to the issue with some expertise: He has a master’s degree in organic chemistry and used to work in the pharmaceutical industry designing medicines. His children – 6 months old, 8 and 12 – were all born at home. Aside from one visit to an emergency room for a bruised finger, none of them has ever been to a doctor, and they’re all healthy, he says, except for the occasional sore throat or common cold.
“The doctors all have the same script for vaccines,” says Ellison, who runs The People’s Chemist, a website about health.
He is working to build and support his children’s natural immune system using three healthy meals a day, exercise and sunshine. He says if his kids get sick he would rather rely on emergency care than vaccines.
“It’s much more soothing to trust emergency medicine than a vaccine, which for me is like playing Russian roulette,” he says.
Yet as Samantha Purkiss learned, bringing infected people to the emergency department is simply another way to spread disease.
Purkiss’ 7-month-old daughter, Olivia, got measles while in a San Diego hospital emergency room last month. Olivia had visited the ER while her dad was having an ingrown toenail removed. Two weeks later, Olivia was back in the emergency room with measles. Doctors spent 12 hours testing and observing her. She later recovered.
“We are blessed because she didn’t end up with any complications,” says Purkiss, 20, who is 16 weeks’ pregnant and takes care of Olivia full time. “If the wrong person is in the wrong place, that happens.”