Infant Botulism: How Babies Are Treated and Get Better

My baby drank ByHeart formula but seems well. What should I watch for?

Signs can take up to 30 days to show. The California program that treats infant botulism says a baby who seems well does not need tests or treatment. Watch for poor feeding, loss of head control, trouble swallowing or weakness. If you see these signs, CDC says to get medical care right away.

The California program says doctors usually start treatment right away if they think a baby has botulism, because early treatment helps babies get better faster.

Constipation is often the first sign, though many babies are constipated for other reasons. Because babies cannot describe how they feel, the program says the illness can only be spotted by watching closely.

How do doctors find out if it is infant botulism?

The first diagnosis comes from the baby’s signs on a doctor’s exam. CDC tells doctors not to wait for lab results before treating. A stool sample is then tested to confirm it, and that test often takes days.

A negative stool test does not rule out infant botulism. Giving the medicine does not change the stool test result. Doctors must report a suspected case to the state health department.

How does a baby get BabyBIG?

Your baby’s doctor calls a California state health program that has a doctor on call day and night. If the signs point to infant botulism, that doctor sends the medicine. Parents do not order it.

BabyBIG is made from human antibodies against the botulism toxin. FDA has approved it to treat infant botulism types A and B. It is given once, through a vein.

CDC says this kind of medicine stops the toxin from doing more harm. It does not heal damage the toxin has already done. That is why weakness gets better slowly, even after treatment.

How much does BabyBIG help?

In a trial of 122 babies in California, BabyBIG cut the average hospital stay from 5.7 weeks to 2.6 weeks. No serious side effects were linked to it. In a second study of 382 babies, those treated sooner went home sooner.

A later study looked at U.S. babies treated from 2003 to 2015. Treatment in the first three days in the hospital shortened the stay by 3.7 weeks, compared with untreated babies in the earlier trial. Treatment on days 8 to 10 shortened it by only about one week, a difference that could have been chance.

CDC says all 48 babies in the ByHeart outbreak were treated with BabyBIG. These studies describe groups of babies. They cannot predict how any one baby will do.

What happens while a baby with botulism is in the hospital?

Without BabyBIG, weakness often reaches its low point one to two weeks after a baby is admitted. Some babies need a breathing machine for a time. Many are fed through a tube in the nose, and breast milk is the best food.

Babies treated with BabyBIG who need a breathing machine use it for 1.8 weeks on average, compared with 4.4 weeks for babies not treated with it. Infection, such as in the ears or lungs, is the most common problem during the stay.

The toxin does not reach the brain. Babies can still hear and feel normally. The program notes that some parents find a daily journal helpful.

What does recovery look like after a baby goes home?

Most babies recover fully, but it can take months. Many stay constipated for weeks. Early CDC data on 46 babies in the ByHeart outbreak found about two in three needed therapy or feeding help after going home.

A baby keeps passing the germ in stool for weeks to months. Wash your hands after every diaper change. In a study of 66 babies, half still passed the germ after about 6 weeks in type A cases, or about 3 to 4 weeks in type B cases.

The illness rarely comes back. Call your baby’s doctor at once if the weakness gets worse or feeding problems return.

Some vaccines must wait six months after BabyBIG, so ask your baby’s doctor about timing. The program advises doctors to check a baby’s development at 6, 12 and 24 months.