Baltimore area is a hotspot for a mysterious and scary disease

Infant Botulism is a rare bacterial infection
Posted at 10:55 PM, Feb 20, 2017
and last updated 2018-12-28 10:12:38-05

When Liam Gallagher was 10-weeks-old, the normally happy, curious newborn suddenly became weak and sick. Mom Amanda thought her son was going to die.

"I really didn't think I was taking him home,” she said. “And they didn’t know what was wrong with him."

The new mom rushed her son to the emergency room after noticing something wrong. Doctors ran numerous tests, but didn't have any answers. The little patient was declining rapidly, by day three, Liam couldn’t lift his limbs or his head, and his cry sounded more like a gargle.

"I just kept thinking he hasn't eaten in three days, you know, how long can a baby go without eating or drinking,” said Amanda. “And he's so little they couldn't get IVs in him, it was just terrifying."

Finally, one of the doctors recognized the symptoms, suspecting Liam had contracted a mysterious and scary illness called infant botulism.

It's a very severe and extremely rare bacterial infection that causes frightening symptoms like paralysis and even death.

"What we're most concerned about is that this infection can lead to a patient's inability to breathe because they're so weak, so we want to prevent that at all costs if possible," said Dr. Keisha Bell, the Medical Director of the Pediatric ICU at Sinai Hospital Baltimore.

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Botulism is the most deadly toxin known to man. The bacteria spores can be found in some foods like honey, but the bacteria is also in soil and can become airborne.

"And then the spores get into the stomach and they grow into bacteria, and then they emit this toxin, and the toxin attacks the nerves in the body," medical director of emergency and inpatient pediatrics at GBMC, Dr. Melissa Sparrow said.

The disease is so uncommon, only between 100 and 150 cases are reported each year in the United States.

Turns out, Maryland is a hotspot for infant botulism. According to state data, 10 children contracted the illness in 2015. Three of them picking up the infection in Baltimore County. That's where the Gallagher’s live, and Liam was fighting for his life.

"He had all these machines around him and there were at least three doctors in the room at all times monitoring him, so it was definitely really serious," Amanda said.

The baby lost his ability to suck and swallow, and couldn't control the muscles he used to breathe.

Liam was hooked up to a feeding tube and was on a ventilator.  His little, listless body was propped in a sling so his lungs would be open, allowing him to breathe easier.

"And he just continued to go downhill,” said Amanda. “It wasn't helping."

Doctors quickly ordered the $43,000 antitoxin treatment called Baby Big and had it flown in from California.

In just two days, Amanda says Liam started to improve.

"He moved his fingers that day," she said. "I cried, it was really exciting, he hadn't moved at all. He even opened his eyes that day."

She says the smallest steps forward suddenly were huge milestones. Coughing meant Liam could clear his own throat, and hearing her son cry made Amanda ecstatic.           

Most babies with infant botulism make a full recovery. For Liam, that meant about four weeks in the PICU, and then months of rehab relearning the skills the swift-moving illness stole from him.

Since then, Liam has fully bounced back. The blonde-haired toddler has a mouthful of teeth, and endless energy.

Doctors still haven’t figured out how Liam came down with infant botulism, and they likely never will. Experts say pinpointing where the illness is picked-up is difficult, and soil tests are usually pointless.      

"It's really surprising and sort of mind boggling that we don't know where the spores are coming from,” said Sparrow.  "These families who have infants who get botulism have done nothing wrong, there is nothing they could have done to prevent it, it is really completely random."

Yet Amanda quickly found out she wasn't the only mother in the region to battle baby botulism

"I think about 30 different moms reached out to me to let me know that he was going to be okay,” Amanda said.

One family was even on the same street as Amanda, only twelve houses away. Their daughter was diagnosed nine months before Liam got sick. The babies were two of the three cases in the county for 2015.

A puzzling coincidence, but according to the CDC, the cluster of cases don't qualify as an outbreak since health officials can't say for sure the two children caught the bacteria from a common exposure.

"What kind of bothers me is this happened to two children, and with everything I know, it wasn't really told to other families to be on the lookout for what this is, and how to tell for it," said Amanda.

All she wants is for other parents to be educated about this condition so they won't have to go through the same emotionally and physically draining ordeal she had with Liam.           

Parents can't prevent infant botulism, but you can be on the lookout for the signs and symptoms so the infection can be quickly treated.

"Keep bringing your baby back, don't ever worry about calling, picking up the phone, parent’s instincts are good and right and that's what we're here for," Sparrow said.

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