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Louie's story

Louie with his dadLouie Edmonson is a toddler living life to the full. He was identified at birth as having a hearing problem in both ears, news which shocked his parents, Jody and Paul. The National Deaf Children’s Society’s ‘Newly Identified Weekend’ helped the Edmondsons realise that they weren’t alone. Louie was born on 18 December 2005 and was immediately identified with both microtia – an underdeveloped ear – and artresea – a congenital imperforation or closure of the normal channel in the ears. He saw various consultants and was checked with a ‘New Born’ test and officially identified as having moderate hearing loss. “Our immediate reaction was that of being extremely upset,” says Paul. “We were frightened for his future. There was also great confusion, even guilt, as to how this could have happened. There was no history of deafness in our families. Unfortunately in Louie’s case there were no real answers.”

At just three months old, Louie had a hearing aid fitted which gives him 100% hearing. “It was a godsend and allowed us to take the oral communication route. We worked hard on constantly talking to him and now his listening skills are excellent.”

Parents of newly diagnosed children also need support with emotional issues. “It took a long time to come to terms with his condition,” explains Paul. “It was the unknown that troubled us the most: what would happen and how we would cope with it. And then it was the fear that he might not speak.” This was short-lived: Louie’s first word was said at seven months old and he now has over 30 words in his vocabulary.

“Now, our greatest fear is that he may not be accepted by other children. Fortunately he’s turned out to have a great, outgoing personality so we are perhaps a little less anxious about that now.”

In order to help them deal with the issues, Louie’s family attended one of the NDCS residential courses for families with deaf children who have been newly diagnosed.
These ‘Newly Identified Weekends’ give families the opportunity to gain information about the support available and share experiences with other parents. Their children meanwhile, are looked after by experts and offered a range of activities.

“It was a heart-wrenching and emotional experience,” says Paul, “but an extremely rewarding one. It started off with all the families being fairly guarded but when we were put into groups all the emotions came out! This was followed by a number of group tasks and various speakers who helped to answer our questions.
“We came away having learnt a great deal about deafness in general, and it really helped us to realise that we weren’t on our own with Louie’s condition.”

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