Woodstock baby has botulism diagnosis

Benjamin Ellis Shell, 2 months old, son of Antonette Capone-Shell and Jerramy Shell, of Woodstock, was rushed to Inova Fairfax Children's Hospital last week with symptoms of botulism. One test has come back positive, but the hospital is waiting on another to confirm. Courtesy Antonette Capone-Shell

Benjamin Ellis Shell was a healthy baby boy. Born 9 pounds, 7 ounces, on April 4, he was exceeding milestones, rolling over after a month and crawling at 2 months.

So when the 11-week-old boy slowly refused to eat and his bowel movements stopped, his mother Antonette Capone-Shell, 24, rushed him to the emergency room.

Last Friday at Winchester Medical Center, her son was fitted for an IV, but kept getting worse. He was transferred to Inova Children’s Hospital in Fairfax on Saturday and put on oxygen. Three days later, he was confirmed with botulism.

“He can kind of breathe on his own, but he needs help,” Capone-Shell said on Monday in a phone interview from Fairfax. “He’s so weak he can barely open his eyes.”

The hospital administered a BabyBIG Botulism Immune Globulin Intravenous (Human) (BIG-IV) serum that Benjamin’s doctors ordered from North Carolina.

“I cried when it came,” his mother recalled. But they would wait until Tuesday for results of a 72-hour stool test from Richmond confirming the illness.

“If the serum does not work and it’s not botulism … “ she said, but she didn’t finish the thought. Already they had been though a barrage of tests and CT scans, with little improvement to Benjamin’s condition.

She said her husband Jerramy Shell, 26, was the strong one when their son needed a spinal tap and his wife broke down.

“I couldn’t even look at my son for probably five hours, because I was so scared of losing him, because they didn’t know what was going on,” Capone-Shell said.

Then on Monday night, Benjamin suffered a setback. Fluid entered his airway, making breathing difficult. His heart stopped, and hospital staff revived him with chest compressions. They extracted the fluid and inserted a breathing tube.

Now he’s stable, Capone-Shell wrote Tuesday on the Prayers for Benjamin Ellis Facebook page she started to keep family and friends involved in her son’s crisis.

That day, the hospital fed him breast milk through a tube and that night she and her family checked into the hospital’s affiliate Ronald McDonald House.

A nightmare for the couple, who have two other sons, 5 and 2, botulism was a concern his mother had not thought to fear.

“They haven’t had a case in this hospital in years, so a lot of the nurses here haven’t experienced it,” she said.

The Centers for Disease Control and Prevention report only an average of 145 cases in the United States each year. Of those, 65 percent are infant botulism, 15 percent are foodborne and 20 percent are wound-related.

But the cause isn’t as easy to determine.

Capone-Shell said it’s possible the bacteria came from something she ate and transmitted to her son through breast milk, because he hasn’t ingested anything else. But it also could have come from dirt or dust.

Outbreaks of foodborne botulism are usually caused by improperly home-canned foods with low acid content, like asparagus, green beans, beets and corn, the CDC reports at http://www.cdc.gov. Improper handling of foods at retail locations, like chopped garlic in oil, canned cheese sauce, chile peppers, tomatoes, carrot juice and baked potatoes wrapped in foil can also cause contamination.

Capone-Shell said she already knew not to feed children younger than 12 months honey, which can contain the bacteria, “[But] honestly I didn’t know that not feeding your child honey was so important,” she said.

Most wound botulism cases are associated with injection of black-tar heroin, particularly in California, the CDC website says.

“Most infant botulism cases cannot be prevented because the bacteria that causes this disease is in soil and dust,” the website states. Even after cleaning, the bacteria can be found inside homes on floors, carpet and counter tops.

Capone-Shell expects her son’s hospital bill to exceed $50,000 and said the botulism medication costs $45,000, which she isn’t sure will be covered by insurance.

A family friend started a site for Benjamin at http://www.gofundme.com/y24wa5d. So far the site has raised $1,600 toward its $50,000 goal.

“I mean, every penny helps,” Capone-Shell said, “so I’m just thankful for that.”

Contact staff writer Josette Keelor at 540-465-5137 ext. 176, or jkeelor@nvdaily.com