A young girl spoke for the first time this winter after her OHSU Doernbecher Children’s Hospital care team performed a rare, complex surgery that allowed her to use her vocal cords. The surgery comes nine years after clinicians with the Doernbecher Children’s Hospital Neonatal Intensive Care team saved her life as a newborn.
Delayza Diaz, now 9, was born with an extremely rare congenital anomaly that left her without an opening through her larynx, or voice box, that includes the vocal cords. Because this prevents normal breathing, most children with the condition don’t survive. With the help of the NICU team, Derek Lam, M.D., M.P.H., a specialist in pediatric otolaryngology, was able to stabilize her with a ventilator and tracheotomy procedure.
Her first few months in the hospital were touch-and-go, but against all odds, since then Delayza has been able to stay healthy and thrive at home, Lam said.
“This is a very rare condition, and one I’d never seen personally in my career until Delayza,” said Lam, an associate professor of otolaryngology –head and neck surgery in the OHSU School of Medicine. “I’ve been caring for Delayza since she was a baby, and it’s been very inspiring and rewarding to see the progress she’s made over the years. But I was still hopeful there was a longer-term solution that would improve her quality of life.”
Without vocal cords, Delayza was never able to develop her voice; instead, she relied on a “language” of sounds generated from her tongue and cheeks, called buccal speech. Lam said that while she could have gone through life without further surgical intervention — using a tracheostomy tube to breathe through the front of her neck — she would never have a voice. He was determined to give her a better option.
In 2022, Lam performed a complex airway reconstruction surgery, which he hoped would finally allow Delayza to speak with her vocal cords. The operation, which took over eight hours, involved removing abnormal cartilage from her windpipe and creating an opening between her vocal cords so they could function properly. Lam inserted a stent, which stayed in place for nine months to ensure the area healed optimally while minimizing scar tissue.
After nearly a year of recovery and counseling with speech-language pathologists, in winter 2023, Delayza was able to speak several words with her new voice — an incredible milestone in her health journey. One of the first phrases she spoke was, “I love you, Mom.”
“Hearing those words for the first time, I was so excited,” said Lucero Diaz, Delayza’s mom. “I’m still surprised when I hear her voice.”
Delayza and Lucero recently shared their experience in stories that aired on CNN and Univision.
Lam says Delayza’s new voice will improve with practice as she continues to work with her care team.
“What’s most amazing about Delayza’s story is that through all of it, she’s never lost her happy, positive spirit,” Lam said. “My hope is that this new voice will change the trajectory of Delayza’s life and open doors for her that may have stayed closed before.”