Meet Austin Matthew, and his mother who had a feeling
“...if you feel something is not right, speak up and keep searching for answers.”
HICKORY, N.C. (WBTV) - A mom in Hickory reached out wanting to tell you something she says she’s learned: Be an advocate for your kids.
Victoria Simmons said she wants to shed light in case other parents are struggling with knowing something is going on with their children, but not sure what. She and her husband, James Simmons, have been there.
“We already had a girl and a boy when we found out we were expecting again,” Victoria said. “It was very much of a shock since I had an IUD in place. But there we were, and nine months after learning I was pregnant, Austin Matthew Simmons was born.”
The year was 2015. Before Austin was released from the hospital the nurses noticed he was having a hard time supporting his head. They called it “floppy.” Victoria and James were told his muscles just needed to strengthen but everything was fine as long as whomever was holding him gave his neck extra support.
With that, doctors sent Austin home with a “car bed” instead of a regular car seat so he wouldn’t suffocate himself. Two days later, Victoria said they went for his first pediatrician check-up. His doctor agreed with the hospital staff that over time Austin would outgrow his “floppiness.”
“We took so much extra precaution and care with Austin to make sure he was okay,” Victoria said. “We limited holding him and only laid him flat instead of inclines. But every check-up he was still ‘floppy.’ At 6-months-old he outgrew the car bed and his doctor assured he was okay to use a regular car seat. Meantime, we were noticing other delays. Austin didn’t walk on time. He never spoke. These things sent red flags up, especially as his older brother is on the autism spectrum.”
Austin’s doctor ended up moving when Austin was three and Victoria found a new doctor who started asking lots more questions. Austin was referred to speech, occupational and physical therapy services, and to a pediatric neurologist. Then testing began. All tests always came back as nothing. Speech therapists taught him sign language as he still didn’t talk. At the age of four, Austin said his first word, and his walking was improving with therapy.
“But even with the improvements, his dad and I knew something wasn’t right,” Victoria said. “Austin started complaining about his head hurting. He’d get sick even on short car trips. We pushed his pediatrician to switch his pediatric neurologist to one at Levine’s Children’s and our very first visit there was a different ball game! They immediately set us up for an MRI of his brain. ‘Finally,’ we thought. ‘Maybe some real answers.’”
Then... Covid hit. Everything came to a stop. Therapy continued but no MRI. It was pushed out another year.
“I think I counted the days until his new MRI date,” Victoria said. “I just wanted answers so much. As we waited, Austin was complaining to his preschool teachers that his head hurt when he laid down. He stopped wanting to swing. He’d lose his balance when standing still. He came home and just cried about his head hurting. Then, finally, it was MRI day.”
Four days after the brain scan, the neurologist called to ask if we could video chat right then. That neurologist told Victoria and James that Austin has a large cyst in the base of his brain, that was closing off the natural drainage system there. It allowed pressure to build up inside their son’s skull. It also replaced the bottom part of his cerebellum, which affected speech, muscles, and fine motor skills.
“Everything instantly made sense,” Victoria said. “The neurologist told us this was the largest cyst in a child Austin’s age that she’d ever seen. Our son got referred to a surgeon and soon after, was scheduled for brain surgery. Because of the size of the cyst—and where it was placed intertwining with his brain—not all of it could be removed. But it helped correct the pressure, helped his headaches and he’s still going for regular MRIs. There is still a chance the cyst will regrow in the future, but life is better now for Austin since that surgery last August, then it ever was in the nearly seven years before.”
Victoria said Austin also was recently diagnosed with autism and anxiety. He remains in speech, occupational, and physical therapy to improve low muscle tone.
“Who knows what could’ve happened had we not pushed for second opinions?” Victoria asks. “Maybe he’d have needed emergency surgery, or even possibly died from the pressure build up. I don’t know who needs to hear this right now, but as parents, we know our children better than anyone and if you feel something is not right, speak up and keep searching for answers.”
The picture of Austin’s MRI, showing the massive cyst is below. Truth: Advocate for your kids. #MollysKids
Copyright 2022 WBTV. All rights reserved.