Julie and Luis Aguilar’s fourth baby boy had a slightly different personality than his rambunctious older brothers. He was a laid-back, go-with-the-flow kind of child.
He was also happy, smiling and healthy, his parents said.
Until, one day, he wasn’t.
On April 3, Michael, then 5 months old, woke up at 4 a.m. But he wasn’t hungry. Nor would he eat much at 11 a.m. Or at 1 a.m. the following day, on Easter Sunday.
And his parents noticed another change.
“He was starting to get floppy,” Luis Aguilar said. “He was getting weaker and weaker.”
When Julie Aguilar picked him up, Michael’s little body flopped against her chest. His expression was blank.
“I remember thinking, ‘Is he dying?’ ” she said. “I didn’t want to think it. I just felt like something wasn’t right.”
The Grover Beach couple decided to take Michael to Sierra Vista Regional Medical Center, which has a pediatrics unit. It was a timely decision.
“I went to see Michael, and it was clear as soon as I saw him — from his floppiness, the weakness in his facial muscles — it was clear this was a case of infant botulism,” said Natasha Raja, medical director of pediatrics at Sierra Vista.
Infant botulism attacks babies younger than a year old when ingested spores of a bacterium colonize and grow in the infant’s large intestine. The spores produce botulinum toxin, which causes weakness and loss of muscle tone because it blocks the nerve endings’ ability to signal the linked muscle to contract, according to the California Department of Public Health.
Babies with infant botulism show signs of constipation, weakness, loss of muscle tone and ultimately paralysis. They also have difficulty feeding and may have trouble breathing.
Michael had a classic case of the disease.
Doctors ordered a dose of BabyBIG, an anti-toxin that costs $45,000 to $50,000 per dose and is produced only in Temecula, Luis Aguilar said.
“We’re very lucky to have obtained it so quickly,” Raja said. “Michael had a severe, rapid case of (infant botulism).”
The medicine stopped the progression of the disease, but it couldn’t stop the process that had already started, Raja said. After it was administered, Michael’s breathing got worse.
While Julie Aguilar was home resting, Raja told Luis Aguilar that Michael would need to be transferred to Cottage Children’s Hospital in Santa Barbara, which has a pediatric intensive care unit.
Shortly after, Luis Aguilar heard the words “Code Blue” over the intercom system at Sierra Vista and watched one of Michael’s doctors sprint down the hall. He sprinted too.
Michael had stopped breathing, and Raja and emergency physician Rushdi Cader helped to resuscitate him.
Luis Aguilar felt his eyes welling up as he watched doctors work on his son. He tried to hold the tears back, so they wouldn’t worry about him. Then he left the room, and prayed.
“I said, ‘God, Michael was your son before he was ours. If you want to take him, OK, but I want you to bring him back to us,’ ” he said. “In my mind, I had already played out scenarios that he’s gone. I was waiting for them to tell me he’s not going to make it.”
But as he prayed, Luis Aguilar felt a sense of calm wash over him.
“From that point until they told me they had him intubated, I didn’t feel anxious,” he said. “I just was calm.”
An ambulance was sent from Santa Barbara to San Luis Obispo to pick Michael up. Luis Aguilar called his neighbor, James Rey, a pastor at Calvary SLO Church in San Luis Obispo, at 3 a.m. to ask for a ride to the hospital.
Over the next two weeks at Cottage Hospital, Michael would be intubated two more times to help him breathe.
Over time, the swelling in Michael’s airway was brought under control, and he was able to breath on his own. On April 20, the Aguilars were able to take Michael home.
Infant botulism is extremely rare. There are normally fewer than 100 cases a year in the United States, but it is more common in California than elsewhere in the country.
California has about 12 cases a year, Raja said.
While honey is the one identified and avoidable source of the spores, most infant botulism patients injest the bacteria by swallowing microscopic dust particles carrying the spores.
This is what may have happened with Michael. A Sierra Vista doctor asked the Aguilars if there had been any grading or construction in the area.
Yes, the Aguilars replied, noting that someone had prepared a neighbor’s backyard to do some landscaping.
While the Aguilars have insurance, the economy had already taken a toll on Luis Aguilar’s business. He owns Cornerstone Landscape, a Grover Beach business that provides construction and maintenance services.
That, coupled with the costs of staying in Santa Barbara, near their son, have taken a toll on the couple’s savings. Rey and other friends have planned a fundraising event to help the family.
Before this happened, the Aguilars had not heard of infant botulism. By sharing their story, they hope to warn other parents of this little-known disease.
“From the start of the symptoms to him not breathing was 45 hours,” Julie Aguilar said. “Hopefully, this will help someone catch the symptoms.” Reach Cynthia Lambert at 781-7929. Stay updated by following @SouthCountyBeat on Twitter.