Living with microtia – Jasper’s story

When Jasper Hayes was born in April 2007 by emergency Caesarean, a midwife popped into the ward to tell his mum Emma ‘Your son’s OK but he’s missing an ear’ – before leaving again.

The 45-year-old, who lives in Nottingham where she runs her own PR company, remembers: “I was dazed from the surgery and devastated.

“He had a very small right ear lobe, and the local hospital was frankly pretty clueless. It was obvious from birth that he had no hearing on his right side – I remember the paediatrician trying to work out how check inside an ear with no opening. They weren’t sure what Jasper’s issue was, but within a few hours of his birth I read an article in the Daily Mail and discovered microtia and a Mr Neil Bulstrode, based at Great Ormond Street Hospital.”

Often paired with other conditions, microtia is a malformation of the external part of the ear or pinna. It varies in severity and usually affects one ear or, less commonly, two. There is a significant impact on hearing, while the appearance of the outer ear can be restored with a prosthetic or a surgical reconstruction.

Emma continues: “I had so many unanswered questions. My initial concerns were over the potential for the microtia to be linked to other conditions. Thankfully that was soon ruled out. I felt upset that I could have caused this, although I hadn’t, and I would lay Jasper on his ‘missing’ ear so that people wouldn’t ask questions. That side of his face was slightly underdeveloped, although you’d barely notice now.

“As Jasper grew, I worried about his speech and things like bullying. I found it hard when kids stared, although adults can be worse.”

Emma adds that only recently her son was stared at during a family celebration in Pizza Express. On another occasion, Jasper, who has a younger sister, Harriet, aged 10, and an older one, 14-year-old Ruby, was asked if he enjoyed rugby. Someone had assumed his slightly misshapen ear was the result of a scrum injury.

In September 2017, aged1 0, Jasper had a bone-anchored hearing aid (BAHA) fitted, locally to his home but in consultation with Mr Bulstrode at Great Ormond Street. The aid is attracted to a magnet which sits inside his skull. Before that, while the quality of his hearing was good, direction of hearing was not.

“He could hear a pin drop, but wouldn’t know where it was,” explains Emma. “But the aid is amazing. He broke it over Christmas so was without it, and we really noticed the difference. Jasper chats quite openly about the aid and having a missing ear, and really microtia has become a non-issue. He loves the aid because he can stream music through it – although I wish he wouldn’t do that in class!

“He also has a great party trick of being able to attach a coin or anything magnetic to his head. The BAHA just sits on his hair, so it’s really easy to take on and off.”

Jasper loves music and drama, and he only stopped being a chorister recently after his voice broke.

In May 2016, Jasper had initial surgery on his right ear, which was rebuilt using his rib cartilage and skin from the side of his head. Emma had to contact Mr Bulstrode at Great Ormond Street directly to get her son under his care, and believes that, had the family stayed under local care, the only option would have been a prosthetic ear. However, the surgery was done on the NHS.

“The cosmetic issues definitely affect him more than the hearing loss. His new ear grows hair because the skin is from the side of the head, which he does have to shave. But because Jasper is blonde, it’s hardly noticeable.”

Now in grammar school, having passed the 11+ exam, he gets good support in what his mum describes as a nurturing environment.

“It’s lovely. Inquisitive questions are fine but there’s absolutely no bullying,” adds Emma.

By Juliet England