Noah’s Tiny Voice Speaks Volumes

Noah Jackson was born without a voice. Because of a rare genetic disease, his airway was so narrow he couldn’t cry. In fact, he could scarcely breathe, and had surgery at five days old to implant a tracheostomy tube that let air pass through a hole in his throat. Cuddling their newborn, parents KC and Rebecca hoped his voice box could be surgically reconstructed later on.

When Noah was 18 months old, he was referred to the otolaryngology team at Lucile Packard Children’s Hospital Stanford, including Peter Koltai, MD, who is adept at multi-stage repair of the voice box.

“This was as bad as it gets,” said Koltai. After the “trach” tube was placed, Noah’s tiny airway scarred shut. No air came down from his nose or mouth to his lungs.

Noah, prior to surgery, at 20 months.

Noah also faced other difficulties. His genetic disease, Fraser Syndrome, causes structural anomalies throughout the body. Noah has only one eye, and was born with hand, foot and digestive-tract problems. But the trach was his biggest medical challenge. If the tube came out when a caregiver’s back was turned, Noah could not cry for help.

In November 2010, Koltai opened Noah’s voice box and removed the scar tissue that blocked Noah’s airway.
“Fortunately, we were able to preserve the vocal cords,” Koltai said. He used two pieces of rib cartilage to hold the voice box open. Noah would keep breathing through his trach until the airway was fully functional.

A few months later, a check-up revealed that the reconstruction was only partly successful. “Because the vocal cords had been involved in scarring, they had fused back down like a zipper,” Koltai said. Fortunately, there was still a small opening. Over the next four months, Koltai used a balloon coated with medications to re-open the airway.

In June 2011, Koltai re-examined Noah. “I’ll never forget it,” Rebecca said. “Dr. Koltai came running out and said ‘Do you want the good news or the good news? I’m going to take the trach out right now!'”

A few minutes later, with Noah seated on Rebecca’s lap, Koltai removed Noah’s trach. The little boy breathed: in and out, in and out.
“It gives you goose bumps every time it works,” Koltai said.

Noah now attends preschool, and is hitting cognitive and developmental milestones on schedule.

And he is talking. “His voice will probably always be on the quiet and raspy side, but he’s understandable,” Rebecca said. “That’s huge.”