How one family’s lives were forever changed by meningococcal disease
Carol Boutilier describes her granddaughter Jaycee Tracey as a beautiful, healthy, vibrant, and happy child. That’s how the family remembers the little girl.
“Jaycee was a beautiful, healthy, vibrant little girl with a kind, gentle manner,” Boutilier says. “She loved dancing around in fancy dresses and tiaras, as much as she loved catching frogs or digging for worms in her pink rubber boots.”
On Monday, May 6, 2019, just a month shy of her fourth birthday, three-yearold Jaycee died suddenly of meningococcal septicemia.
Now Boutilier, a medical doctor in Glace Bay, N.S., wants parents to know effective vaccines are available, though they’re not all included in routine immunizations.
“When we can prevent a large percentage of cases... we should absolutely be doing that,” Boutilier says. “In the worst cases, even the best medical treatment can’t prevent the disease from progressing and a previously healthy child from dying. Prevention is the key to saving lives from this dreaded disease.”
Just days before Jaycee’s death, she and her little sister Jaya had been enjoying a Friday night sleepover with Boutilier, as they often did.
“Everything was normal,” Boutilier recalls.
On Sunday, Jaycee’s mother Allison Kendall called to let Boutilier know Jaycee wasn’t feeling well. She was vomiting and had a fever, symptoms familiar to any parent of a young child.
Later that same night, Kendall called again to say Jaycee’s condition had changed and she was concerned. Boutilier drove over right away, and found Jaycee looking very unwell. The child was pale, and her lips were bluish. Boutilier also noticed some blue spots on her trunk. That’s when she knew they had to get her to the hospital.
“It all happened so fast,” she says.
The symptoms of meningococcal disease are initially very similar to many other common childhood illnesses: fever, vomiting, headache, and muscle aches. In Jaycee’s case, there were initially no signs of anything more than a common self-limiting viral illness.
After calling 911, the girl was transported to the Cape Breton Regional Hospital nearby. That’s when they learned the diagnosis: meningococcal septicemia. Treatment started with IV antibiotics, but Jaycee’s condition continued to deteriorate.
Plans were made to airlift Jaycee to Halifax, but just as they were transferring her to the Lifeflight stretcher, she had a cardiac arrest.
At 3 a.m., Jaycee passed away. It had been less than five hours since the situation had become serious.
“The thing with meningococcal disease is that it presents with nonspecific symptoms similar to any common viral illness,” Boutilier says. “By the time it presents itself as being something more serious, the bacteria have multiplied rapidly and produce toxins. And [by that point], it's really taken hold on your your body and is very rapidly progressive.”
Meningococcal disease is also rare – so it’s often not suspected right away. Between 2013 and 2017, there were a total of 548 cases of invasive meningococcal disease in Canada, with the highest number of cases reported in infants less than one year of age.
Boutilier recalls the memories of the medical team trying to resuscitate her granddaughter with an unwelcome vividness.
“You can never erase that picture from your mind,” she says tearfully.
Today she is passionate about raising awareness about meningococcal disease. As a medical doctor, she feels she can make a difference.
Many parents are not aware there are multiple vaccines available to help prevent different types of meningococcal disease. Some of these vaccines are not included in routine immunizations covered by provincial health plans. While vaccines are not 100 per cent effective, they can help prevent the majority of cases.
World Meningitis Day, which takes place on April 24, seeks to raise awareness about the disease. A vaccine for meningitis B, the cause of Jaycee’s illness, is not covered by provincial health plans in Canada but has been part of routine immunization schedules in some countries in Europe and south Australia.
Meningitis B accounts for greater than 50 per cent of all invasive meningococcal disease in Canada, Boutilier says. “So it's the one that's most common and most deadly, and… we do have vaccine options. But it's not on the routine immunization schedule.”
The National Advisory Committee on Immunization (NACI) is a committee of experts who review vaccines, and make recommendations on their use in Canada. Physicians look to NACI recommendations for guidance, Boutilier says.
The NACI recommends meningitis B vaccines for individuals who are at high risk due to underlying conditions, or who have been exposed to an outbreak. They say it “can be considered” by individuals who want protection against meningitis B.
Boutilier explains the lack of recommendation for routine use of meningitis B vaccines has resulted in these vaccines not being widely promoted by healthcare providers, or included in the routine vaccination schedule by public health agencies.
“One healthy child lost to
this horrible disease is too many when there is mounting evidence for the safety and efficacy of meningitis B vaccines,” she says.
Boutilier and her family experience symptoms of PTSD to this day, and she describes experiencing very powerful grief.
“This experience has really destroyed our lives. Our lives are forever changed,” she says.
Boutilier would encourage parents who are concerned about their child’s risk of meningococcal disease to have a conversation with their health care provider.
She wants parents to know that even though meningococcal disease is rare, it can happen to any healthy child, seemingly at random.
“It doesn’t always happen to somebody else,” she says softly. “It’s devastating when it happens to you.”