Virginia Beach baby battles rare case of botulism

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by Lucy Bustamante, 13News Now

WVEC.com

Posted on July 16, 2013 at 6:19 PM

Updated Tuesday, Jul 23 at 1:01 PM

UPDATE: July 23: A report from the Centers for Disease Control CDC shows everything came back negative for Botulism spores. The doctors say the spores were most likely on a dust particle that Ellia ingested on a walk outside or a play mat on the floor. They say they will never truly know. Read more on Emily's Facebook page

UPDATE:  Ellia Mae Peterson is no longer intubated.  As of Wednesday afternoon, Ellia can breathe on her own and handle her own secretions, thanks to the rare anti-toxin flown in from California.

VIRGINIA BEACH-- The parents of three-month-old Ellia Mae Petersen say they watched their baby become paralyzed before their eyes.

Neurologists at CHKD diagnosed Ellia with a rare case of botulism last Thursday.

According to the CDC, infant botulism is a rare but serious paralytic illness caused when a person consumes the spores of the botulinum bacteria, which then grow in the intestines and release a toxin.

Ellia's mother, Emily, says her baby seemed constipated and stopped smiling. "We thought it was a virus and we wanted to wait it out."

But four days later, she took video of her daughter moaning.

"I heard her moan all night long and I went into the bathroom and I told my husband, 'We've lost our baby,'" said Emily.  "I don't think we're going to get her back because we just couldn't figure it out."

The next morning, doctors at CHKD listened to Emily's plea and began testing little Ellia.

"The neurologist lifted her leg, looked in her eye and said she has botulism. Of course, we're standing around the bed saying, 'Okay, what?'" Emily said.

Paralysis began to set in and the baby was immediately intubated.

"We heard what was coming and frankly we didn't know what was going to be on the other side of it," said her father Tim.  "We didn't know if this was the last time we were going to see her off of a ventilator, so we tried to capture it all, to make sure that we had her."

That night, a rare medication from California, immune globulin, was ordered to stop the baby's paralysis.  According to CHKD Neurologist Dr. Michael Strunc, babies used to be intubated for months and thanks to this drug, it's just weeks.

Now, the hunt for the cause begins.

Doctors wonder if Ellia's older brothers may have transferred the spore after playing in the dirt in the backyard and then touching his sister.   The CDC is running tests on the soil.

"We want to know what's in our backyard," Tim said.

The CDC said other usual causes are exposure to honey and corn syrup.

A previous case of infant botulism in Suffolk was linked to exposure from a construction site that released dust particles carrying the spore. Tim said his family doesn't live near any construction sites. 

Dr. Strunc said the family may never know the cause, but believes it's important that everybody knows the symptoms.

Strunc says one of the first symptoms is constipation.  "The paralysis starts in the cranial nerves and moves south. So, those kids present with constipation and eventually a weakened cry."

Tim, who is also an EVMS resident, and his wife Emily say to trust your gut as much as the information and advocate for your baby.

Click here if you'd like to help Ellia.

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