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John's story

Lyn describes what happened after her son, John (not his real name), had mumps.

“He was 9 and he contracted them a few days before his 9th birthday. He had a very miserable 9th birthday because he couldn’t open his mouth and he couldn’t eat anything. On about the third day of us noticing that he obviously had mumps, he told me that he had a funny ear. I had had experience with my oldest child having mumps when she was little, and she had been very unwell but we hadn’t noticed any symptoms about her hearing or her ears, other than the obvious swelling around that area. So I rang my doctor’s surgery and said that he was complaining of feeling uncomfortable around his left ear and I was told not to worry that it was due to the swelling and that was a Friday.

On the Sunday afternoon I was speaking to John and he told me to speak to him in his other ear because he couldn’t hear me well and so when the surgery opened on the Monday morning I rang and said I was concerned and made an appointment. We weren’t able to be seen until early into the afternoon of that day, but when I did take him to the doctor our family doctor was very kind but said that he felt this was a complication of having mumps.

While we were in his surgery he rang the audiology department at the hospital, who asked to see John immediately and we took him to the hospital and they did some hearing tests which indicated that he had lost most of the hearing in his left ear. Much to my horror they told me that this was probably a permanent loss. They gave him a course of steroids and arranged to see him again in 4 weeks, but when we went back after the four weeks he had actually lost more hearing. So he now has no hearing in his left ear. It was very traumatic for him because like most children you are waiting to get better and for a long time he asked me when his hearing would come back. I think of my three children it was most traumatic for him because he suffered very severely from ADHD and was on medication for that. He was difficult and restless in the classroom and once recovering initially from the disease, the classroom became a very alien place

He, at 9, had never been to a birthday party. He had never been invited. He was very anti-social because of the ADHD and this isolated him even more. He often didn’t hear what people said to him. He had learnt to ride a two wheeler bike and we live on quite a busy road and we had to disallow him from riding the bike on the road because he – if he didn’t hear anything through that ear he thought there was nothing there. Even walking to school became an issue. We live really close to the school, we live in a safe area for children to walk, but he wasn’t safe. We had to help him relearn road safety and he really resented it. The funny thing, we would call him for dinner and we would forget that he couldn’t hear and we would sit down and eat. and then he would come out and be horrified that we hadn’t told him that it was dinner time.

He spoke very well at a very young age. His hearing was fine yes and he was very articulate and we noticed that he lost a lot of word power as we called it or voice confidence because from then on he was never quite sure whether he did hear and he started to mispronounce new words that he learnt because he didn’t always hear correctly. Several times we would have to correct him about the pronunciation of something and it was very obvious that he wasn’t as able to learn. You know he had had the restrictions because of the ADHD but he was a very auditory learner and that really impacted on his learning.

It was really devastating and I felt like as a parent I should have done more. I should have known. I had no idea. I mean I was blown away when the doctor told me that the loss of hearing was one of the unusual complications of mumps. I didn’t have that information but more I think I was angry that he appeared to have slipped through the system in terms of immunisations."

This story has been edited from a recorded interview with Lyn for the Piercing Memories project and is posted on IMAC’s website with her consent. The interviewer was Elaine Ellis-Pegler

Last updated: Apr 2017