At Cedars-Sinai, a game-changing diagnosis of rare infant botulism

At Cedars-Sinai, a game-changing diagnosis of rare infant botulism

When Song Dabell brought her twin baby boys home from the hospital this past September, she and her husband Mark jumped right in to the super busy life of caring for newborn twins and a four year old.  The Dabell boys, Jacob and Josh, were born Sept. 4, five weeks premature. Both were in good health and weighed about five pounds, a robust weight for newborn twins.

But a month later, Dabell noticed Jacob was listless. He wasn’t drinking as much milk as his brother.  Then Dabell saw that Jacob seemed less alert and weaker. He also seemed to have trouble with bowel movements.    

After two visits to the pediatrician, the doctors admitted Jacob to Cedars-Sinai Maxine Dunitz Children’s Health Center. His diagnosis shocked the family: Botulism. 

Deborah Lehman, MD., said Jacob’s symptoms strongly indicated to her and the pediatric team a diagnosis of infant botulism, even though the disease is rarely seen. According to the Centers for Disease Control, there are only about 75 cases annually of infant botulism in the United States.

 Dr. Lehman immediately contacted the state and ordered a special anti-toxin to treat the baby within 24 hours of his arrival.  It is a one dose drug known as BIGIV (BabyBIG ®) and Lehman says she saw results right away.  “The next morning, I came in and he was moving his arms and legs, it was amazing.”

Although rare, infant botulism typically occurs in babies three weeks to six months old. Because of its severity, it is important for parents to recognize its symptoms, including:

  • Constipation
  • Weak cry
  • Listlessness
  • Trouble feeding
  • Muscle weakness
  • Trouble breathing

Infant botulism is near impossible to prevent. It occurs when babies ingest spores found in dirt or dust. The spores of Clostridium Botulinum bacteria, are not harmful to older children or adults, but are difficult for infants to handle. It’s unclear why some children develop the disease, while others in the same environment do not. The one tip for avoiding the disease is not to give infants honey, as it can be a source of the botulism spore.

Although they were taken aback by Jacob’s diagnosis, the Dabells were “ecstatic because they were reassured of a full recovery.”

If Jacob had not been properly diagnosed and received this special drug, the disease could have been fatal or the baby could have been hospitalized for upwards of four months.

Jacob was hospitalized for three and a half weeks. Once the antitoxin took effect, he needed to learn to feed again before he could be sent home.

Today Jacob is home and doing great. His mom says he is putting on weight is more alert and the lackluster look is gone. Dabell, who considers herself lucky to be a busy parent with all her sons healthy again, says the lesson she wants to share with parents is to “trust your intuition when you think something is wrong.”