A Fine Form of Speech

Rick, with trach tube, and his brother Kabir

By Peter McKenzie-Brown

The world is a vast place. According to UN stats, about three people (net) join this planet’s population every second. As we write these words, a global population of eight billion is imminent. In such a world, is it possible that medicine can identify an entirely new way to speak? Indeed it is. It appears that our adoptive son, who as an infant lost his voice-box and spent most of his early childhood in a hospital, was discouraged from even trying to talk. Since then he has learned to speak – hoarsely, but successfully – using methods previously unknown in medical literature.

My son – his name is Rick – was ten months old when his biological mother took him to the hospital with a high fever and Rubella, a viral infection commonly known as German measles. The medical team put a tube down his throat to prevent him from suffocating, and then did a tracheotomy – an incision in the windpipe – to save his life. If they had done the tracheotomy first his vocal chords would have been saved, but his life was their priority. With intubation, Rubella bacteria migrated to his vocal cords, causing extensive scarring, and narrowing his throat.

He spent the next two years with a steel trach tube, which needed frequent cleaning, sticking out of his throat, and had regular operations – twenty in all – to dilate his throat. A nurse was assigned specifically to him every shift, 24 hours per day. Since he couldn’t speak, he had bells on his shoes so nurses and visitors to the ward always knew where he was. My wife, Jasbir did some shifts in pediatrics, where she first encountered him.

He’d play happily with other children in pediatrics’ rec centre, and casually wave goodbye to those going home. By then he was so accustomed to child patients coming in briefly and then going home that it seemed normal. “I remember wondering how he would develop bonds if everyone always left, while he stayed behind,” Jasbir says. “Nurses, doctors, kids, parents, play therapist, speech therapist – the one common factor was that they all left.”

When Rick was about two years old, the social system wanted to find foster parents for him so he could leave the hospital. The requirement was that the parent had to be an RN willing to quit his or her job to focus on Rick. Karen, a nurse who had looked after him in intensive care and visited for years, wanted to adopt him but was single and could not quit work. Another pediatrics nurse, who was married, also wanted to adopt him but would not quit her job.

We had a son eight months younger than Rick, however, and one Saturday morning talked about his case. Before Jasbir could raise the matter of adoption, I asked “Why don’t we foster him, and then adopt him?” The rest, the saying goes, is history. Rick quickly adjusted to living with us and we did not see any signs of him missing the hospital. “He cried when we returned him to the unit after his first overnight stay with us,” Jasbir remembers. “The nurses thought he was crying because he had missed the hospital. But I reminded them that children do not cry when they are happy. Once, when we were driving past the Holy Cross, Rick pointed to the hospital and said, ‘my ‘opital, it full of ‘owies.’”

To get Rick accustomed to his new life, the newly forming family would take trips to a park near our home. “I will never forget the first time we did that,” Jasbir says. Rick “had spent almost three years indoors. Seeing all those big trees and the wide open spaces scared him so much that I had to carry him most of the walk.”

In a personal reflection on his early years, Rick once wrote that “my brother Kabir was just eight months younger than me. We were very good friends when we were young, and my sister was born about a year and a half after I joined the family. Kabir and I teased her a lot when she was old enough to tease, and once fed her some white paste glue covered with brown sugar.” He added, “She soon became very bossy, probably because she had to defend herself against Kabir and me, but she soon became part of our games.”

The Medical Update

At the beginning of this paper I noted that Rick has no vocal chords. That’s a huge inconvenience if you want to learn to speak. The nurses at the hospital taught him to communicate by teaching him some simple sign language. To get an idea how simple, put your thumb between your first and second fingers. That meant he needed to go to the bathroom.

It was a new and challenging world for us all. Well before the adoption rites were complete, we agreed that we would not put up with this sign language he had learned in the hospital. Kabir, who had been an only child, suddenly had to share our attention. Rick had learned to cope with other children by being aggressive. That had to stop.

The whole family had to adjust. We parents had to adjust to a having a new child without the usual preliminaries. To Rick’s horror, his new parents refused to respond to sign language. “We were determined that he would learn how to speak,” Jasbir recalls. At first, this led to tantrums, but his new parents were adamant. He slowly began to make progress, gradually learning to speak – as a child – with a deep, husky voice. Nicknamed “motormouth” because he was talkative as a child, Kabir encouraged him to speak by example. The two became close friends.

The reason his voice was and still is hoarse and a bit raspy is related to the reality that he doesn’t have vocal chords. He didn’t have the equipment for speech, so Rick found a workaround: the palatine uvula, which is a piece of flesh hanging from the soft palate in the back of the mouth, composed of connective tissue containing specialized glands, and muscular fibers.

When Rick recently had some specialized medical tests at a clinic in Vancouver, the ear, nose and throat specialist noted with astonishment that Rick had learned to speak by voicing into his uvula, somehow. A check of the medical literature found no other cases of the kind. As far as we know, Rick – now 43 – is one of a kind. Of course, as a family we have known that for most of his lifetime.