Little boy from Fountain learns how to speak after specialized procedure
FOUNTAIN, Colo. (KRDO) - It's hard to hear 5-year-old Ariel Gutierrez speak. Ariel whispers. But his parents call those whispers a miracle.
Ariel's story stems from a rare birth defect.
"His airway didn't form in the womb," says Sandra Gutierrez. "And so from there my beliefs were to leave it in the Lord's hands."
He has CHAOS syndrome, also known as Congenital High Airway Obstruction Syndrome. In other words, he can't breathe on his own.
"I was sad for the longest time, but I've gotten through it," says Sandra. "It's been hard, really hard."
His mom Sandra says a pediatric tracheostomy performed at birth kept her baby boy alive.
"It was really hard because I couldn't hear him cry, I couldn't hear him goo," says Sandra.
Since then, Ariel has been in and out of the hospital. He's had over a dozen surgeries. And it's weighed on his entire family, especially his older sisters.
"I was scared for him, says Ximena Gutierrez. "He's the best brother I've ever known and I love him."
"He's been through so much and all of this has been really hard on him," says Daniela Gutierrez. "I'm growing up and being able to experience what being a normal kid is about very new, but fun for him because he isn't always stuck at home."
About a year and a half ago, Ariel underwent an airway reconstruction procedure, and this past spring Ariel's trach was removed. Now he doesn't rely on a machine to help him breathe like he once needed.
"But ever since he had his surgery, he's been talking nonstop," says Sandra. "Verbalization has been great and it was awesome to hear his voice for the first time."
A team of doctors at Children's Hospital Colorado performed the highly specialized procedure.
"An airway reconstruction to rebuild the part of the airway that he was not born with, it was partially formed but not completely formed and open," says Dr. Jeremy Prager. "So we rebuilt that airway, we make it open and we use cartilage like a jigsaw puzzle to try and re-construct it."
Ariel's miraculous transformation has inspired big sister Daniela to pursue a career in medicine.
"I do want to do something in the medical industry," says Daniella. "But I feel like after everything and knowing all his different medical differences has really pushed me to want to go to medical school and become a medical student and one day become a nurse or something more."
Ariel understands English, Spanish, and American Sign Language. And with the help of speech therapy, he's beginning the process of talking. For Ariel's family, hearing him speak for the very first time is music to their ears.
"Him saying mom, that was a real tear-jerker for me," says Sandra.
It's a sign of a future they knew wasn't certain. Ariel's whispers speak louder than words.
Doctors don't expect Ariel will need any future surgeries. They will check in on how his airway grows with him in the years to come. His family is hopeful his speech will improve with more time and therapy.
