The California program that provides the world’s only medical treatment for potentially deadly infant botulism also offers traumatized families hope of a different sort – silly cards on their babies’ first birthdays.
Every year, staff at the state’s Infant Botulism Treatment and Prevention Program decorate and mail roughly 200 cards to celebrate the recovery of children affected by the rare and dangerous condition.
In recent months, that group has included
dozens of U.S. babies affected by an outbreak of botulism tied to contaminated ByHeart infant formula.
Amy Mazziotti, of Burbank, California, received a birthday card for her son, Hank, in September, months after he was hospitalized for 12 days with botulism after drinking ByHeart formula.
“The fact that they take the time to send hand-drawn cards to each baby is incredibly special," Mazziotti said. “When you’re worried about your baby, it’s the small acts like this that somehow feel really big.”
The cards are coordinated by Robin Hinks, a program assistant whose duties include decorating, tracking and mailing them.
“I am a big fan of drawing animals with party hats,” said Hinks, who favors crayons and colored pencils. “Like, here’s a frog with some balloons and a little penguin.”
The program’s primary purpose is to help diagnose and treat the disease that occurs when babies ingest botulism spores that germinate in the intestine and produce a dangerous toxin that attacks the nervous system, causing paralysis. Death rates were once as high as 90%, but now are less than 1% with treatment.
The only treatment, known as BabyBIG, is an IV medication made from the pooled blood plasma of adults who have been immunized against botulism. California’s program is the sole source worldwide. After it was approved
Because the disease is so rare, with about 200 cases treated each year, the botulism center has become a source of information and connection for families facing the ordeal.
“Support of the babies and their families remains paramount to our program and our mission,” said Dr. Jessica Khouri, the program’s senior medical officer.
Heather Goody, of Gallipolis, Ohio, said she felt alone when her daughter, MaryEllen, contracted infant botulism in 2016. Nearly a decade later, Goody still runs a Facebook group, Infant Botulism Awareness, to connect the parents of sick babies. It now has more than 500 members.
She still recalls how touching it was to receive a card on MaryEllen’s first birthday.
“It brought all the feels, but most importantly the feeling of gratitude that she was thriving in all areas of life,” Goody said.
Maintaining that connection was a priority for the late Dr. Stephen Arnon, who with colleagues in 1976 identified the rare form of botulism that affects babies younger than 1 — and then spent the next 45 years figuring out how to treat it.
Arnon, who died in 2022, stayed in close touch with families of kids sickened by infant botulism, updating them as his scientific work progressed.
Today, nearly 1,500 families are part of the botulism program's parent network, which includes children treated two decades ago. The group shares everything from preschool graduations to college acceptances and other milestones.
“Former patients have gone on to have families of their own and keep in touch with us,” Khouri said. “It really is an incredible part of the work we do.”
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