Viral encephalitis robbed this 2-year-old of his ability to walk, talk, eat and play, but treatment and rehab have him on the go again.
By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org
The transformation is nothing short of miraculous if you ask Denise Smith.
Her 2-year-old son, Chandler, came into Riley Hospital for Children with a severe case of viral encephalitis, an inflammation of the brain caused by an underlying virus.
It robbed him of his ability to walk, talk, eat and play.
Her little boy was a shell of the active, happy toddler whose giggle could melt hearts.
“I was very scared and hopeless at that time,” Smith said from her son’s bedside, where she has been since he was first hospitalized in mid-December.
“What helped was knowing I could be here all the time and talk to him, whether he heard me or not. And the nurses have been great at helping us through our tougher days,” she said.
“There have been a lot of tears. As a mom, that’s your baby and when you’re up here by yourself, what are you to do? It’s been very, very stressful.”
Chandler started out his treatment at a hospital in Richmond, where the family lives, before being transferred to IU Health North Hospital. He was moved down to Riley in Downtown Indianapolis on Christmas Day.
“The Christmas tree is still up at home,” said Chandler’s grandfather, Steve McClure. “We’re waiting for him to come home.”
Chandler was transferred to inpatient rehab at Riley in mid-January to begin the long, slow crawl back to independence.
Riley speech-language pathologist Sarah Sternasty remembers seeing Chandler just before he moved to rehab from the eighth floor.
He was nonresponsive, she said. He wasn’t opening his eyes or visually tracking. He was in a coma-like state.
A couple of days later, he was beginning to smile.
He still had a long way to go, but Sternasty knew then that her young patient might surprise them.
And so he has.
Chandler, who was expected to spend six weeks in rehab relearning all of his skills and building up his strength, is set to go home Feb. 15 – two weeks earlier than planned.
“We have moved him up quite a bit because he is making such rapid progress,” said Sternasty, adding that he has been a bright spot in her day.
That was obvious recently during a visit to the boy’s room as he was chattering with visitors, playing word games with his nurses, blowing kisses and mugging for the camera.
“He is a happy, happy boy,” his mom said. “Very playful and rambunctious.”
She worried that she wouldn’t see that same playful kid again when the illness took hold. Viral encephalitis is rare, but it can cause brain damage.
Symptoms can include high temperature, headache, sensitivity to light, weakness, stiff neck or back, vomiting, personality changes, confusion, memory loss, seizures, paralysis and coma.
Lucky for Chandler, he is on his way to a remarkable recovery. Sternasty and her team helped wean him from a feeding tube, so he is now back to eating solid food and drinking liquids.
Because he came into rehab nonverbal, she did a formal language test recently and he performed above average for his age, she said. He remembers all of his words, his mom said proudly.
He has officially graduated from speech therapy, but he continues to work with physical therapy and occupational therapy to improve his walking skills.
“He wants to get up and run so bad,” Smith said.
His grandpa is convinced he’s going to be a stuntman someday.
Having involved caregivers makes a big difference in recovery, Sternasty said.
“Mom and Grandma and Grandpa have been super involved and have been really helpful in carrying over things we were doing in therapy, which always helps speed that progress,” she said.
“A lot of it is just Chandler. We anticipated he would need a lot more therapy and more time. He just kept proving us wrong.”
If all goes as planned, the little boy with the big personality will have his bell and butterfly celebration – a tradition for rehab grads – a week from today.
“It’s a big day for him,” Sternasty said. “He’s come a very long way. He made our jobs really easy and fun while he was here.”
Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org
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