Living with a tracheostomy - Angus's story

Jenny’s son, Angus, was diagnosed with subglottic stenosis and needed a tracheostomy to help him breathe. Here she remembers how he lost his voice for nearly a year.

“When Angus was a baby he had very noisy breathing. I wasn’t too worried because he was happy, thriving and gaining weight.

“A 13 months, he had the MMR vaccine. Within 24 hours his noisy breathing had become much worse. My partner took Angus to the GP who told us to go to our local hospital, Southampton.”

Diagnosis

“Over the next couple of days, it became more difficult for Angus to breathe. The hospital tried giving him steroids and adrenalin. In the end they took him to surgery to intubate him.

“They sedated him and he was unconscious in intensive care for a week, with a breathing tube and a nasogastric tube to feed him. My partner and I took it in turns to stay with him. We had two older children (11 and 13) at home. It was very hard to see our baby looking so vulnerable and we were terrified of what might happen.

“Angus had severe subglottic stenosis. The subglottis is the narrowest part of a child’s airway, just below the vocal chords – Angus’s was very narrow, which is why he couldn’t breathe. The doctors were amazed he hadn’t needed treatment sooner.”

Tracheostomy

“Angus was taken back into surgery for a tracheostomy to help him breathe. They created an artificial opening in the windpipe just above his vocal chords, held open by a tracheostomy tube. The air goes in and out of the tube, instead of through the nose and mouth.

“When Angus came out of theatre, he had no voice. At 13 months old, he’d just started babbling and saying the odd word. It was devastating that he could no longer speak, or even cry, while he had the tracheostomy.

“Angus spent another five weeks in hospital and, during that time, my partner and I were taught how to change the tracheotomy tube, and trained in CPR, so that we could care for Angus at home.

“They wouldn’t let us leave hospital until they were confident we could manage – it was such a big responsibility.”

Managing at home

Angus younger image - tracheostomy real story
“When Angus came home, we changed the tracheostomy every week. This involved taking out the tube, which meant Angus couldn’t breathe for a few seconds. It was difficult because he was too little to understand what we were doing.

“We also had to regularly suction the airway to get rid of secretions (it’s harder to clear your airways by coughing when you have a tracheostomy). This might be once an hour, or every few minutes if Angus had a cold. We had a battery operated suction we could charge up and take out and about.

“With time we became much more confident. Angus’s granny also trained to use it. But otherwise, we could never leave him with anybody else.

“Between the ages of 14 and 22 months, Angus had no voice. He tried to say things but he just sounded a bit like Donald Duck. He had some speech and language therapy and we learnt a bit of Makaton sign language to try and help with communication. We weren't prepared for how hard the silence would be.”

Next steps

“In March Angus went to Great Ormond Street Hospital to have a Microlaryngoscopy and Bronchoscopy (MLB), to look at Angus’s airways using a tiny telescope under general anaesthetic.

“Angus needed to go back for an operation in June so they could widen his airway. The surgeon took a graft of cartilage from Angus’s rib, crafted it into the right shape and put it into his tracheal airway. A stent was used to keep the airway the right size.

“Angus had to keep his tracheostomy for several more weeks to give his airway time to heal. He went back into surgery so they could check whether the operation had been a success and remove the stent.”

Getting Angus’s voice back

“Two weeks later, we returned to hospital and I took out the tracheostomy, for good. It was wonderful to have Angus’s voice back - it was croaky at first but soon went back to normal. We stayed in hospital for a few days to make sure there were no problems with Angus’s breathing.

“Angus had a little hole in his neck where the tracheotomy had gone in. We had to be very careful not to submerge this with water in the bath. It closed over after a couple of months.

“Despite missing months of speech development while he had the tracheotomy, Angus had caught up to his chronological age within about eight weeks.

“We felt so free after getting rid of the medical equipment for Angus’s tracheostomy. It was a relief when life returned to normal. Angus was back to being a happy little two-year-old boy.”

Progress

“When Angus was four he got a bad bout of croup and we volunteered to go back to get his airways checked. We were worried because we’d been warned that the graft cartilage might not grow as Angus did. Luckily, the result showed the graft was growing with him.

“By this point, Angus had become very weary of people in green coats. I felt rotten taking him back and making him have another general anaesthetic for the MLB. But, luckily, with a bit of reassurance he was fine.”

Happy ending

“I always had a feeling Angus could sing and I wasn’t wrong. Aged seven, Angus was invited to join Romsey Abbey choir. He’s now 13 and goes to the chorister school, Salisbury Cathedral. I will never take his voice for granted.”

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