It’s Deaf Awareness Week this month, from 19th – 25th May. Ahead of this date, we interviewed the National Deaf Children’s Society on children and deafness.
What is deafness?
There are over 45,000 deaf children and young people in the UK and 1,600 babies are born deaf every year – that’s four every day. Additionally, 8 out of 10 children will have a bout of ‘glue ear’ that can cause temporary deafness before the age of 10.
The hearing system is quite complex and consists of many parts within the outer ear, middle ear and inner ear. For the ear to work fully and allow us to pick up sound, all these parts must work well. Deafness happens when one or more parts of the system are not working effectively.
There are two types of deafness, conductive deafness and sensori-neural deafness. During childhood conductive deafness is the most common form. This happens when sound cannot pass efficiently through the outer and middle ear. At any one time about one in five pre-school children has a build up of fluid in the middle ear known as ‘glue ear’. For most children glue ear clears up by itself but some children may need a hearing aid or surgery to allow air to circulate in the middle ear and prevent the build up of fluid.
Sensori-neural deafness is when there is a fault in the inner ear or the auditory nerve which carries signals to the brain where they are understood as sound. This type of deafness is permanent.
Some children can be affected by both forms of deafness. This is known as mixed deafness.
What causes permanent deafness?
There are many reasons why a child can be born deaf or become deaf in early life, however it is not always possible to identify the reason.
Around half of deaf children born in the UK every year are deaf due to a genetic reason. Deafness can be passed down in families, even though there appears to be no family history of deafness. For about 70 per cent of these deaf children, no other problems will occur, however for the other 30 per cent the gene involved may cause other disabilities or health problems.
Deafness can also be caused by complications during pregnancy, including infections such as rubella or cytomegalovirus (CMV).
Being born prematurely can increase the risk of a child being deaf or becoming deaf; these babies are more prone to infections that can cause deafness. Severe jaundice or lack of oxygen at some point, along with infections during early childhood such as meningitis, measles and mumps, can also cause a child to become deaf.
Vicki Kirwin said: “Receiving a diagnosis of deafness can be a daunting time for many parents but it is often not realised that with the right support deaf children can do and enjoy anything other children can do, from achieving brilliant results in school to playing for their local football team.”
Cathy Denne’s youngest daughter Abigail has moderate hearing loss.
“My youngest daughter Abigail, aged two, was an unplanned home birth which meant she missed out on the newborn hearing screening that other babies get before they leave hospital. We had the test two weeks later, we weren’t worried at all, there was no hearing loss in the family and Abigail’s six year old sister Molly and half-sisters Rianne, 20 and Zoe, 18, had been fine. Abigail failed the test, but we were told not to worry too much, because sometimes children with perfectly normal hearing do.
“We were referred to the audiology department at our local hospital and had a second round of tests two weeks later. We spent that fortnight doing what I’m sure a lot parents in our situation do: clapping our hands and making noises to see if our daughter could hear us. She seemed responsive enough – certainly no different from how Molly had been at that age. This time the tests took ages. After an hour and a half we were told that they were very sorry, but that Abigail did have hearing loss – it looked to be moderate – and she would need to wear hearing aids in both ears.
“We were absolutely knocked for six. The news was a complete shock. We had never imagined our daughter would have hearing loss. It just didn’t make sense to us. Initially my husband was very upset but he soon came to terms with it; he took a positive approach almost straight away. I was the other way round; as it sank in over the next few days I was absolutely devastated.
“I worried for Abigail – because she was so young they couldn’t rule out some kind of syndrome, so we would have to wait and see whether she developed any other health issues. Not only that but I had real trouble reassessing the future I had imagined for Abigail. I ended up going to a counsellor, who helped me come to terms with this new reality.
“Abigail had her hearing aids fitted at nine weeks. Once it had sunk in for both of us we just wanted to do everything we could to help her. Our audiologist had given us lots of literature from NDCS at that initial appointment. I read it religiously.
“In September last year we went on the NDCS Newly Diagnosed Family Weekend in Brighton. We got to meet other families who were going through what we were in terms of understanding, and coming to terms with their kids’ deafness.
“NDCS has always been a great resource for seeking advice. Abigail went through a stage when she used to pull her hearing aids out – we lost a few, one was fed to the dog, one ended up in the bath. It was a real challenge. I went on to the parents’ forum on the NDCS website and ended up chatting online with a mum in Norfolk who has four daughters, three of whom are hearing-impaired. It has been great to tap into her knowledge.
“We’ve had options all along – that’s the great thing. We’ve been able to cherry-pick what’s best for us. NDCS has been a great support network – more than anything it has been there as a safety net if we do run into anything we’re unsure about. As Abigail gets older it’ll be nice to go to more events and meet other kids and families in our situation. Thanks to NDCS we will always know where to go for information, advice and help.”
Vicki adds: “Cathy’s story is not uncommon but as you can see, there was light at the end of the tunnel. It is vital parents know what support is available and NDCS is a great source of information and advice. We run several events a year around the UK, like the one Cathy attended. They enable deaf children and young people to learn new skills, gain confidence and meet other deaf children.
“Most importantly, at NDCS we believe in informed choice whereby parents and children can choose the best course of support, treatment and technology for them in consultation with and support from their GP and specialists. So we encourage any parents with questions to get in touch with us.”
- The National Deaf Children’s Society (NDCS) is the leading charity dedicated to creating a world without barriers for deaf children and their families. Given the right support deaf children can achieve the same as any other child.
- There are more than 45,000 deaf children in the UK. NDCS works to ensure deaf children get the support they need by providing impartial advice to families about the range of communication methods open to them and by campaigning on their behalf. The charity also holds events for deaf children and their families across the UK.
- NDCS provides free information and support through publications, web forums, a freephone helpline, specialist advisers and family events;
- For more information visit ndcs.org.uk. For further support, parents can contact the NDCS Freephone Helpline on 0808 800 8880 (voice and text), email firstname.lastname@example.org, or chat online at ndcs.org.uk/livechat.