After a tragic loss, family steps up in swine flu vaccine trials

News reports tell us about the fact that many parents are feeling cautious about the Swine flu (2009 H1N1 flu) vaccine. Here’s a tragic story about a family who chose not to immunize their children against the flu and their activism about the Swine flu vaccine.USA Today carries the story of Sean and Ryan Moise:

(They) played “rock-paper-scissors” to see who would get their flu shot first. Faith bravely stepped up after her older brothers. Unlikely pioneers though they may seem, Sean, who turns 13 Monday, Ryan, 11, and Faith, 4 “and a half,” are among just 600 children in the USA in government-sponsored pediatric trials of the vaccine for H1N1, or swine flu.

The children are more motivated than most to fight flu. They know how serious it can be. In 2003, their brother Ian, a robust 6-month-old, died of seasonal flu. He lived less than 30 hours after symptoms set in.

“That’s why, when I heard the vaccine trial was coming to Kansas City, I was so eager to get my children into it,” says Julie Moise, 42. “I’m more afraid of the flu than the vaccine.”

Sean fretted on Facebook that he was signing up to be a pincushion. He decided to go ahead with the trial, anyway. “The first time I was a little, kind of, freaked out because I didn’t know what to expect,” he says. “After a while, it’s not really all that bad. And it’s good to know I should be resistant to H1N1 if it comes around.”

An early peek at the trial’s results appear to justify the family’s confidence. The findings released Sept. 21 show that H1N1 vaccine appears to protect most kids 10 to 17 years old, who are among those hit hardest by the new influenza.

As in seasonal flu, younger children are likely to need two doses. “The response in young children is less robust, but this is not unexpected,” Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, the study’s sponsor, said when the results were released.

In 2003 . . . Ian came down with the flu. Soon he was feverish and short of breath. A pediatrician confirmed the diagnosis and recommended treating his symptoms. “That night he didn’t want to lay flat in his crib,” Moise says. “I held him in the recliner all night.”

By morning, Moise developed flu symptoms, too. Her husband, Glenn, agreed to get Sean and Ryan off to school. Ian took a turn for the better, or so the family thought. His fever dropped from 104 to 100 degrees. His panting had turned into a sigh, Moise says. Still, she worried. And later that day, she called her husband at work. “I said, ‘I don’t like how Ian looks. Can you come home?’ ”

He found Ian sitting in his bouncy seat and picked him up. “At that moment,” Julie Moise says, “he stopped breathing.”

A postmortem showed his airway was plugged by mucus, which caused respiratory failure and cardiac arrest. Two things still nag at Julie Moise: First, how often doctors and nurses said “it’s just the flu.” More troubling is the guilt Moise feels because she and her husband weren’t vaccinated. “You have to wonder,” says Moise, a flight attendant, “did I bring it home?”

Ian’s death turned the family into activists. They joined a group of other parents who’ve lost children, called Families Fighting Flu, to call attention to the risks of neglecting vaccination. They launched Ian’s Rainbow Flu Foundation, which sponsors flu walks and vaccination clinics. And when the chance popped up to enroll their children in the vaccine trial, the Moises grabbed it. So did Laura Jaworski, Julie Moise’s best friend, who enrolled her sons Zach, 3, and Nick, 6.

Christopher Harrison, the lead investigator at Children’s Mercy Hospital, says the Moise and Jaworski children were among 121 children from the Kansas City area in the trial. A parent’s consent is sufficient to enroll a youngster, but all children sit in on the conversation with doctors as they explain the nature of the trial and ask parents to sign the consent form.

Children who’ve reached “the age of reason,” Harrison says, sign a consent form, too. “It felt kinda cool,” Sean says, “like I was taking responsibility for what I was about to do.”

Harrison says most people enrolled their children in the trial to protect them from swine flu, especially with school approaching, but many also took into account the good that can come from the research. Most know that the vaccine is similar to standard flu vaccines, so it is likely to be safe and can’t transmit the flu. As the trial was enrolling, he says, flu began spreading widely in Kansas City. In the past month, he says, half a dozen children with H1N1 have needed intensive care. A 16-year-old has died.

Moise notes that 36,000 people die each year of seasonal flu and says one death is too many. She begins reciting names of children who have died and whose parents banded together in Families Fighting Flu. “All these children were healthy. Every one had insurance,” she says.

“How many times did I say in a 24-hour period, ‘Oh, it’s just the flu’? I didn’t know flu kills healthy children. That’s what’s so scary.”

Here are a few of my other blogs on the topic:

Enter your email to subscribe to Dr. Walt's blogs.

You have successfully subscribed to the newsletter

There was an error while trying to send your request. Please try again.

Dr. Walt Larimore will use the information you provide on this form to be in touch with you and to provide updates and marketing.