Toddler paralyzed by rare Guillain-Barré Syndrome still recovering
Imagine your child getting sick with what you think is just a typical virus, but then they become paralyzed. That happened to a local toddler.
Doctors at Children's Memorial Hermann Hospital have been working hard to get her back on her feet, after she suffered a rare autoimmune condition.
Physical therapy on a one-year-old, who isn't even old enough to understand what's happening, is no easy feat, but a team at TIRR Memorial Hermann is taking on the challenge, to help Joleigh.
"She was terrified of new faces because she's in that stage developmentally, but the therapists at TIRR have been amazing with just understanding that she is one and being patient and kind of working their way into sessions. We have like a play party before we start a session, we have 10 to 15 minutes where they're just playing to get to know her," says Satoiya Babineaux, Joleigh's mother.
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It all started back in mid-November when Joleigh got sick and was sent home from pre-school with a stomach virus.
"She went to urgent care, and they gave her an anti-viral and they said she was fine. We followed up with her pediatrician, maybe like a week later, and she said she was fine," explains Satoiya.
Unfortunately, Joleigh's condition quickly deteriorated after that.
"Joleigh couldn't do anything, she couldn't even sit in her car seat," remembers Satoiya.
Specialists at Children's Memorial Hermann are the ones who figured out the serious problem.
"Joleigh was ultimately diagnosed with Guillain-Barré , which is an autoimmune illness that essentially paralyzes you. Typically preceded by a viral infection, that kind of primes the body to attack the peripheral nerves. We do believe that Jolie had a preceding viral illness that kind of triggered this whole cascade of events for her," states Dr. Stacey Hall, who is an Assistant Professor at UTHealth Houston and the Medical Director of Pediatric Rehabilitation at TIRR Memorial Hermann.
At this point, Joleigh was so weak, she could barely move.
"She really couldn't lift up her head. She couldn't lift her arms or legs up off the bed. She even had difficulty with swallowing, so she really was quite quadriplegic," explains Dr. Hall.
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Guillain-Barré Syndrome or GBS is a rare disorder where the body's immune system attacks nerves. It's named after two French neurologists who first diagnosed it in the early 1900's. Like many people, Satoiya had never even heard of the condition before and had to begin researching it, to figure out what was ailing her baby.
"A lot of other people who suffered with it, called it the turtle disease because they said it's a very slow recovery. So, I just kept thinking, oh my gosh, how long am I going to be in this state with my child," wondered Satoiya.
It has been a long road to recovery, going on four months now.
"Joleigh received five doses of IVIG, which is a standard treatment for GBS," says Dr. Hall. IVIG stands for Intravenous immune globulin. That involves an IV of antibodies to help fight infection.
Then, Joleigh underwent extensive inpatient therapy for three weeks at TIRR Memorial Hermann to help her regain strength.
"It was like a little boot camp for her, but she did remarkable," states a smiling Dr. Hall.
Joleigh is still undergoing outpatient physical, occupational, and speech therapy to overcome GBS.
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She's specially fed since swallowing is still tough for her. While she's considered to be in remission, symptoms could come and go for life, but her family is hopeful that won't happen. For now, big relief that she's stronger every day.
"I'm grateful for her life. I know that they said that they're glad they caught it before it hit her lungs, because that could have caused a lot of complications, a lot more complications. So, I'm grateful for that. I'm grateful that they caught like the swallowing issues because she's silently asphyxiating, which means that we have no idea that is happening, so I'm just I'm grateful for the team of doctors. I'm grateful for the staff," says Satoiya.
It was certainly a team effort at Memorial Hermann to get little Joleigh up and going strong again.
Guillain-Barré is very rare in young children, about one in 100,000 cases per year.
For more information, https://memorialhermann.org/services/conditions/guillain-barre-syndrome