Parents share recovery story after baby diagnosed with rare illness

A Ridgeland mother and father are sharing their story of recovery after their baby suddenly stopped eating and became weak, leading to the discovery of a rare illness. Five-month-old Edie Klaus, who is now a happy and healthy baby, became very sick in September. “She was just overall weak and didn’t look her overall self,” Sara Marie Klaus, Edie’s mother, said. “When you have a child that can’t cry, just a tear trickles down, it hits differently,” Edie’s father, Keith Klaus, said.The baby had stopped eating, was very dehydrated, and hadn’t had a wet diaper in nearly 24 hours. The parents initially thought it might be dehydration from being at the baseball field. Realizing their baby wasn’t well, they immediately sought medical attention. “We went straight to the ER, we didn’t play around,” Sara Marie said.When they arrived at Batson Children’s Hospital, a team of specialists began working to determine what was wrong, starting with a series of tests.”When we saw her, she had very little muscle tone, was weak, and had droopy eyelids and trouble latching and swallowing,” Dr. Lamar Davis said. In one day, Edie underwent a lumbar puncture, an MRI with contrast, and an EMG test to examine muscles and nerves. The doctors suspected infantile botulism, a rare diagnosis with only about 75 cases in the U.S. annually. “They said, ‘We think something else is going on. We want to rule out botulism.’ And we looked at each other and said, ‘What?’ You don’t hear it very often,” Sara Marie said.Doctors had to act fast to get the right treatment.”It’s only made in California through the California Department of Health. If you suspect infantile botulism, there is a 24-hour line you can and talk to one of their physicians. They typically agree and ship it within 24 hours. It usually arrives much sooner,” Davis said. “Volunteers get vaccinated for botulism and their antibodies are taken, so it’s essentially a blood product.”The textbook cause of infantile botulism is honey, which is not allowed for babies under a year due to their underdeveloped immune and digestive systems. It can also come from recalled formulas, but Edie hadn’t had any honey and was exclusively breastfed. It was determined she probably ingested it from dirt or soil. “What the bacteria does is make itself a dormant spore so it can survive in the environment for years,” Davis said. “What happens is the baby ingests the spore and once it’s inside, it releases the toxins that cause muscle weakness.”The treatment was flown in, and slowly Edie started to recover. “Really every day was just a beautiful gift, like she picked her arm up or pulled her knee to her chest, and really the big thing was to hold her head up,” Sara Marie said.It took about three weeks and some physical therapy for Edie to fully recover. Her parents are thankful she is OK and grateful for the care they received at Batson Children’s Hospital.Doctors advise that if a child has a change in appetite, a weak cry, or overall weakness, it warrants an evaluation by a physician. Learn more about the signs and symptoms of infantile botulism here.

link