California’s Infant Botulism Treatment and Prevention Program sends more than medical guidance to the families it serves: it also mails hand-drawn birthday cards to babies after treatment for infant botulism.
In recent months, the program has included cards for dozens of U.S. infants affected by an outbreak of botulism tied to contaminated ByHeart infant formula, the Associated Press reported. The cards are sent to celebrate babies’ first birthdays after hospitalization for the rare but dangerous condition.
The AP described one case from Burbank, California: Amy Mazziotti received a birthday card for her son, Hank, in September after he spent 12 days in the hospital with botulism following ByHeart formula. Mazziotti said the cards were special because staff “take the time to send hand-drawn cards to each baby,” and that for parents who are worried about their child, those small acts can feel “really big,” according to the AP.
Program assistant Robin Hinks coordinates the birthday card effort, including decorating, tracking and mailing the cards. Hinks said she is “a big fan of drawing animals with party hats,” and described using crayons and colored pencils for designs such as a frog with balloons and a small penguin.
The program’s medical work centers on infant botulism, which occurs when babies ingest botulism spores that germinate in the intestine and produce a toxin that attacks the nervous system, leading to paralysis. The AP said death rates were once as high as 90%, but are now less than 1% with treatment, and that the only treatment—known as BabyBIG—is an intravenous medication made from pooled blood plasma of adults who have been immunized against botulism. The Associated Press reported that California’s program is the sole worldwide source of BabyBIG.
Dr. Jessica Khouri, the program’s senior medical officer, said that beyond the biological treatment, the program’s mission includes family support. “Support of the babies and their families remains paramount to our program and our mission,” Khouri said, according to the AP.
Families described in the AP story also said the social support built around the program helps them feel less alone long after the initial hospitalization. Heather Goody, of Gallipolis, Ohio, said she felt alone when her daughter, MaryEllen, contracted infant botulism in 2016, and that nearly a decade later she still runs a Facebook group, Infant Botulism Awareness, to connect other parents of sick babies; she said the group now has more than 500 members and that receiving a card on MaryEllen’s first birthday remains a vivid memory.
The program’s parent network traces its roots to the late Dr. Stephen Arnon, who with colleagues in 1976 identified the rare form of botulism that affects babies younger than 1 and later spent decades working on treatment. The AP reported that Arnon died in 2022 and stayed in close touch with families as his research progressed, updating them as his scientific work evolved.
Today, Khouri said nearly 1,500 families are part of the program’s parent network, including children treated two decades ago. “Former patients have gone on to have families of their own and keep in touch with us,” Khouri said, describing the network as a continuing part of the work for the families after recovery.