In June 2023, my infant daughter was diagnosed with Infant Botulism. We were extremely lucky that our pediatrician suspected botulism right away and directed us to go to CHOP for immediate treatment. However, many families are not as lucky because the staff at pediatricians' offices, urgent cares, and hospital emergency rooms do not always recognize infant botulism symptoms. This is literally the difference between life and death for babies with Infant Botulism. If it is caught early enough, babies can receive the antitoxin called BabyBIG. This lifesaving treatment is given whenever clinicians suspect infant botulism, and babies start showing signs of improvement within 48 hours of receiving it.

In Southeastern Pennsylvania, the bacterium Clostridium Botulinum, which causes infant botulism, naturally occurs in our soil. As a result, our area is considered a hotspot for infant botulism. Roughly 100-150 cases of infant botulism are reported in the US each year, so it is an extremely rare illness. However, I now know that 4 other families we already knew from church or our kids' activities have also had someone in their family who had infant botulism.

I am raising money to create and mail 2000 educational refrigerator magnets (roughly 3" x 5") about infant botulism to Southeastern Pennsylvania hospitals, urgent care centers and pediatricians to put on the refrigerators in their break rooms. The magnets will list the symptoms and include illustrations of symptoms. 

The most common infant botulism symptoms are:

• Constipation,
• Poor feeding,
• Weak muscles,
• Weak cry,
• Difficulty breathing,
• Difficulty swallowing,
• Drooping eyelids,
• Sluggish pupils,
• Flattened facial expression, and
• Diminished gag reflex

Infant botulism progresses from the top down, so babies' first symptoms are droopy eyes and weakened neck muscles, then their suck/swallow reflex stops working, so they can't drink milk. Then, if it isn't caught and treated, it progresses down to their lungs and paralyzes the lungs so the baby can't breathe. This is why quick and accurate diagnosis and treatment is so critical. 

In my daughter's case, we were very fortunate that our pediatrician figured out what was going on right away. However, I've spoken with other parents who took their babies to local emergency rooms or urgent cares and were sent home, after being told their baby likely had a virus or just wasn't as hungry.

And this is why I'm here, doing this. The thought that keeps me up at night is: "How many doctors and clinicians are missing infant botulism diagnoses because they don't recognize the symptoms of this very rare illness? And how many babies don't survive as a result?"