Springdale, Ark. (KNWA) — When she was 20 weeks pregnant, Regan Sheets’ sonogram detected her son Matthew would be born with the rare genetic disorder Agenesis of Corpus Callosum.
“That piece of the brain that connects the two hemispheres is missing,” said Regan.
After birth, Matthew was diagnosed with a congenital disorder known as Goldenhar syndrome. He was born without an ear and a submucous cleft palate.
Matthew’s doctors at Arkansas Children’s in Little Rock did what they could to help him not only aesthetically, but also medically.
“They weren’t able to rebuild the ear, but they did get him a cochlear implant so that he can hear on both sides and there is a prosthetic ear that he wears,” Regan said.
At 10-years-old Matthew is developing much differently than other kids his age. Regan said his ailments impact his life daily.
“His biggest challenge is muscle tone so that leads to other challenges such as swallowing, walking, and talking. Everything requires muscles.”
For much of his life, Matthew would travel with his family from Bentonville back and forth to Little Rock to receive his care, but since the opening of Arkansas Children’s Northwest, he is now seen closer to home.
While changing hospitals can be intimidating, Regan explained that she knew the move would be seamless.
“They know how to take care of kids.”
Matthew’s checkups are often with Dr. Charles Bower, a specialist from the ear, nose and throat clinic at ACNW. Doctor Bower is patient with Matthew and it’s clear he cares about his needs.
“He’s the best,” said Dr. Bower with a big smile one his face.
While there’s no road map for Matthew’s condition or care for that matter, Regan said it’s having children’s doctors who are invested in her son, like Dr. Bower, who help Matthew progress in his own way.
“Kids come in all different shapes and sizes, but it’s always a comforting and humbling experience.”
Though Matthew can’t speak in full sentences, he uses sign language and his iPad to communicate. Regan said she expects one day Matthew will be able to fully verbalize how he’s feeling and will also be able to feed himself.