These parents never imagined their child would catch one of the life-threatening diseases that vaccines can prevent. But just because the illnesses are rare doesn’t mean they’re not a tragic reality for parents who have lost their children to them. Here are their stories.
Veronica McNally was enjoying a walk with her kids in May 2012 when 2-month-old Francesca coughed. If Veronica hadn’t been fighting off a cough herself, she might not even have noticed it. But she was worried her daughter had caught whatever she had, so she called the pediatrician. The next day, a doctor examined the baby, said she’d likely picked up some kind of bug, and advised giving it a few days to run its course.
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Two days later, Francesca had a low-grade fever and was too lethargic to nurse. Veronica and her husband, Sean, took her to an emergency room near their home in Oakland County, Michigan. A doctor checked Francesca out but didn’t see any reason to admit her. However, her cough persisted, as did her fever and lack of appetite. “I spent Mother’s Day trying everything I could to make her comfortable,” says Veronica. On May 14, Francesca was admitted to the hospital’s pediatricintensive-care unit with a confirmed diagnosis of pertussis, the highly contagious disease also known as whooping cough. On May 17, she died.
“This disease came at us like a freight train—there was nothing we could do to stop it,” says Veronica. Except now she knows there might have been something: vaccines.
Pertussis, also called the “100 day cough,” develops when bacteria called Bordetella pertussis attach themselves to tiny hairs lining the upper respiratory tract. It’s easy for them to spread when someone coughs or sneezes, and babies are especially vulnerable. While adults and older children are likely to survive the illness, it is most deadly in babies. “They cough for so long and hard that they can lose oxygen to their brain and simply stop breathing,” explains Julie Boom, M.D., director of the Immunization Project at Texas Children’s Hospital, in Houston.
That’s why the Centers for Disease Control and Prevention (CDC) recommends that infants receive a dose of the DTaP vaccine (which also covers diphtheria and tetanus) at 2, 4, 6, and 15 months and then again between 4 and 6 years. Kids should have a booster shot called the Tdap vaccine at age 11 or 12.
In 2012, the CDC also started recommending that women get vaccinated between 27 and 36 weeks of every pregnancy in order to protect their newborn. However, many women don’t realize that. In fact, only about half of pregnant women get Tdap, according to a recent study from the CDC.
Veronica was in the other half. She can’t remember a doctor ever suggesting the vaccine. By the time Francesca was eligible for her first shot, she’d already been exposed to Veronica’s cough for almost a month. “I gave my baby pertussis,” the mom says. “There I was, nursing her and loving her. And I passed this disease on to her and she died.”
Before the vaccine became available in the 1940s, 200,000 people in the U.S. had pertussis every year. The number of cases has been rising again since the 1980s because not nearly enough of us are getting our DTaP and Tdap shots. In 2012, there were 48,277 cases—up from 1,248 in 1981. More than 60 babies have died from the disease in recent years.
Of course, pertussis is not the only vaccine-preventable disease we’re not doing enough to prevent. In the latest numbers available for 2017, the CDC documented 3,299 mumps infections, mostly on college campuses, and 120 cases of measles. These tallies are tiny compared with those before we had vaccines, when mumps was the most common cause of viral meningitis and acquired deafness, 3 to 4 million people had measles every year, and even chicken pox killed 100 people a year.
But experts say these new outbreaks show how pockets of vaccine-skeptical families can put all of us at risk. “We saw 667 cases of measles in 2014. Once you get to 1,000, people start to die,” says Paul Offit, M.D., director of the Vaccine Education Center at the Children’s Hospital of Philadelphia. “Unfortunately, too many parents are more afraid of what’s in the vial than of the disease it prevents.” In an ironic twist of the vaccine success story, we’d made these diseases so rare that most of us have never seen a case of measles or pertussis up close. But the parents who have watched their kids suffer know better—and wish they didn’t.
“Mommy, I Hurt All Over”
Parents who don’t vaccinate truly believe they’re making a decision in the best interest of their child, says Dr. Boom. “However, they’re doing a risk analysis in their head without any idea of how dangerous these diseases can be.” She blames the widespread rumors and misinformation online. Dr. Offit thinks the fear is more visceral. After all, many of us have had to soothe a feverish baby after a day of vaccinations or coax a hysterical toddler through a round of shots, and it’s not fun. “People see their child being laid down against her will and injected with four or five shots at one time,” notes Dr. Offit. “It’s not hard to understand why parents push back.”
Dr. Boom compares vaccines to car seats: “If you lived in a world where there were hardly any car accidents, you’d think, ‘My baby cries and squirms whenever I strap her in; why should I use a car seat?’ But we do use them because we want to prevent something much worse than unhappiness in the car seat—being injured in a car accident.” Shannon Duffy Peterson lost her 5-year-old daughter, Abigale, to pneumococcal disease in 2001, before a vaccine for the virus was part of the immunization schedule in their state. “I still sleep with her Tigger doll every night,” Shannon says. Abigale was a bright, curious girl who loved chasing barn cats on her family’s farm in Sleepy Eye, Minnesota. She had just learned to read, and she loved to bake cookies with her mom and younger brother.
Then one night, Abigale told her mom she had a headache. Shannon tried to give her Tylenol, but Abigale began vomiting and developed a high fever. They rushed to the nearest hospital, 21 miles away. “On the way, she cried and said, ‘Mommy, I hurt all over,’ ” Shannon says. “Those were the last words she said to me. I could literally feel her leaving us.” Abigale was gone within hours.
An autopsy revealed that she’d become septic due to pneumococcal disease, an infection caused by Streptococcus pneumoniae bacteria. It’s the most common cause of ear infections in young children, but it can also develop into pneumonia, meningitis, or bacteremia, the bloodstream infection Abigale had that can be life-threatening. Today, the CDC recommends that all babies receive the pneumococcal vaccine at 2, 4, 6, and 12 months. “It works extremely well,” says Dr. Offit. “I used to take care of kids with pneumococcal disease weekly when I was a resident, and now we rarely see it.”
So for Abigale’s mom, the decision to vaccinate is simple. “I don’t know if it would have saved Abigale,” says Shannon, who now volunteers with PKIDS, a nonprofit dedicated to raising awareness about infectious diseases. “But I know the vaccine would have given her extra protection. She might not have gotten the infection, or it might not have been as severe. And we’ll always live with those questions.”
“It Was Like a Movie”
Abigale’s autopsy also revealed that she was born without a spleen, and doctors say this congenital defect likely made her more vulnerable to pneumococcal disease. Shannon says that when people hear this part of her story, it often reassures them. “They think it only happened because she was medically fragile,” Shannon says. “But how do you know for sure that your child isn’t more fragile? We don’t know what we don’t know. Why take that chance?”
Veronica has encountered similar points of view in her work with the Franny Strong Foundation, which she and Sean founded soon after Francesca’s death. Many vaccine-skeptical parents believe that the odds of avoiding an infection are in their favor because of the low incidence of vaccine-preventable diseases, she says. In fact, many doctors admit that part of the problem is that even professionals aren’t sure how to diagnose the diseases because they’re so rare. Younger doctors may never have seen a case, and older doctors have stopped expecting to see ones.
But those favorable odds can change quickly in communities where vaccination rates are dropping, as Southern California saw in 2015, when a measles outbreak at Disneyland led to 188 cases. “Suddenly we had measles in 24 states because pockets of parents in suburban Los Angeles had decided not to vaccinate their children,” says Dr. Offit. “It doesn’t take much to derail community immunity.”
Ariel Loop, of Pasadena, California, took her 4-month-old son, Mobius, to Disneyland in January 2015, after he’d had his first rounds of shots. However, the measles vaccine isn’t routinely given until babies are 12 to 15 months. “It might sound silly to take a baby to Disney, but he loved looking at the bright lights,” Ariel says. “And it’s just what you do here because we live so close to the park.” Ariel heard about the Disneyland measles outbreak on the news, and when Mobius woke up “on fire” with a fever 14 days later, the disease was her first fear. Sure enough, he had red spots on his chest. She called the emergency room and was told to come through the back entrance. “It was like a movie,” Ariel says. “I was terrified.”
Within 24 hours, he was covered in the telltale rash and fighting off fevers. The entire family was quarantined for four days, but it took a week for the rash to clear up and Mobius had a cough for more than a month. Ariel still worries about whom they might have spread the disease to because measles patients are contagious for up to four days before they show symptoms. “We were all over town the weekend before he got sick,” she says.
“Get Away From the Negativity”
Although Mobius recovered, Ariel and her husband are still afraid. One in 1,000 children who get measles will develop encephalitis, a swelling of the brain that can cause convulsions, deafness, or intellectual disability. Young kids who’ve had measles are also at increased risk for a fatal central-nervous-system disease that can strike anytime in the next ten years. “We just have to wait and hope for the best,” says Ariel. “But if someone had gotten vaccinated, Mobius never would’ve caught measles that day.”
When a pregnant friend developed a bad cough, Veronica admits she hesitated before saying, “You know, I lost a child to whooping cough.” She was glad she’d opened up when her friend rushed to get vaccinated. “We have to change the social norms on vaccines and get away from all the negativity,” Veronica says. “Parents need to say, ‘I vaccinate, and I’m proud of it.’ ” She knows those aren’t easy conversations, but she also knows what’s at stake: kids’ lives. “I think that Francesca was here for a short while to be a part of a greater good,” Veronica says. “But we miss her every day.”