The device behind finding Roger’s voice
Tears trailed down Suha’s face as she heard the special sound of laughter come from her three-year-old son, Roger.
It was a moment she had long been waiting for because until then, Roger was unable to verbally communicate.
Roger was born with atresia of oesophagus with tracheo-oesophageal fistula and has been a patient at The Children’s Hospital at Westmead (CHW) since his second day of life.
Atresia of oesophagus is a rare condition where the section of the oesophagus that connects to the stomach is missing a segment, meaning food and saliva cannot travel from the mouth to stomach.
It sometimes occurs with tracheo-oesophageal fistula, a condition where there is an abnormal connection between the trachea and the oesophagus, as is the case with Roger.
The condition means Roger struggles to breathe independently and relies on a tracheostomy as his primary airway. This lifesaving device is inserted into his trachea from his neck and while making breathing easier, it makes producing sound almost impossible with his airway rerouted away from the vocal cords.
“It is so hard for me, I just want to hear his voice,” Suha said.
Roger’s Speech Pathology team have worked closely with Ear, Nose and Throat specialists as part of his multidisciplinary care, recently embarking on a speaking value trial with the hope of giving him his voice.
A speaking valve is a cap that fits over the end of a tracheostomy tube and redirects his expiration through his voice box, allowing an opportunity for his vocal cords to vibrate and make noise.
Gloria Tzannes, Head of Speech Pathology, has been facilitating the trial with an ENT nurse and said Roger has been tolerating the speaking valve well so far.
"It gives Roger the power and opportunity to vocalise, to make himself heard, and start to develop some verbal communication which then he can communicate with his parents, his siblings, and everybody in his life,” Gloria said.
In the first session of the speaking valve trial, Roger began to make some vocalisations and laughter. It was a sound that gave Suha hope for a brighter future.
“When I heard him for the first time I started to cry, it was something special for me. I am so happy,” Suha said.
Now that he has found his voice, this is just the beginning and one day his voice will be as loud as our own.”
Moments like these are also emotional for the clinicians, a warm reminder of the life-changing impact their care has on patients and their families.
“This is what we’re here for as clinicians,” Gloria said.
Communication is the way we all connect with one another. Seeing children who don’t have that ability to verbally communicate and then suddenly be switched on just by having a little valve put at the end of their tracheostomy tube, that’s just the beginning of the next part of their journey.”
The next phase of Roger’s trial will be introducing the speaking valve at home. It’s hoped Roger will continue to tolerate the valve well and can gradually increase the time he uses it for.
If successful, Roger will be able to improve breathing and swallowing function, develop verbal communication, and be just as loud as other children.
Find out more about Speech Pathology at Sydney Children’s Hospitals Network.