Finding out your baby is hearing-impaired is a traumatic experience. Cara Houchen met two Wearside mums who have set up a help group with deaf children in mind.
THEY have very different stories but these two women have one thing in common – their hearing-impaired children will lead different lives to most youngsters.
After receiving the devastating news, Ruth Neesham and Lynn Dryden were put in touch with each other through the National Deaf Children’s Society.
“It was a relief to talk to another parent who was going through the same thing,” explained Ruth, from Tunstall.
“Everyone had children at different ages so it was a way of finding out what to expect at each development stage.”
They decided they wanted to start a group in Sunderland, somewhere parents could bring their children and talk to other people who really understood what it was like to deal with deafness.
In April last year, the pair founded the Hearing Impaired Toddler Group and since then it has gone from strength to strength.
Nursery nurse Lynn, from Seaham, said: “The first meeting was just me and my daughter Keira and Ruth and her son Jack. Now we have up to 20 families attending our monthly groups, which is great.”
The increase in membership has prompted the duo to push the group forward and merge with a Gateshead-based group.
They have changed their name to the South of Tyne and Wearside Deaf Children’s Society in a bid to reach out to children of all ages and their parents, not just toddlers.
Ruth explained: “We want it to be for the whole of the North East, so if parents are prepared to travel to us, then we want them to know our group is available to them.
“We wanted a group where all the children were the same – they all have hearing aids or cochlear implants and it’s nice that they can mix with kids who are the same as them.
“The social side is really important as most of them will attend a mainstream school and they may be the only child with a hearing problem.
“It’s nice for them to build up a network of friends who are in the same situation.
“Watching the children interact with each other is lovely and it makes it all worthwhile.”
As well as allowing the children to interact and take part in activities, the sessions allow parents to talk and offer each other tips.
“We’ve both learnt a lot just from talking to parents at the group,” said Ruth.
“Although the professionals know everything from a medical point of view, it’s not quite the same as talking to other mums and dads who are actually living through it. We learn something new all the time.”
Although they and their families have now come to terms with having a child who is hearing-impaired, Lynn says it will never be normal and unless you have gone through it, you can’t begin to understand how awful it is.
She said: “It’s frightening and you don’t know what is going to happen next once they are diagnosed.
“Talking to people who have already been through it really helps,they have real-life experience of it and that gives you more confidence to deal with it.”
Ruth added: “We are parents of kids who need to make different choices to normal families.
“We hope that our group can give parents the confidence to make decisions about what to do next and what to do for the best.”
She added: “You can see a real bond developing between the children now, which is nice.
“Keira and Jack both go to Tavistock House Nursery on Borough Road and the staff there raised £1,200 for our group with a charity event, which is a real boost.
“It means the children can enjoy more activity days, so we can’t thank them enough.”
Neither Ruth or Lynn realised just how many families are effected by deafness in children in Sunderland until they started the group.
Said Lynn: “You never think it will happen to you. But we want this group to get bigger and better and be a base for parents with children of all ages.”
l For more information on the group, contact email@example.com or search for the South of Tyne and Wearside Deaf Children’s Society on Facebook.
l Their next event is on Saturday, April 27, from 10am-1pm at Southwick Community Primary School, Shakesphere Street. The NDCS listening bus and soft play bus will be on site and there will be games and refreshments. All families with children who have a hearing impairment are welcome, as well as their siblings.
Ruth Neesham and her husband Paul, from Tunstall, were not prepared for the life-changing news they received when their son Jack was born.
The couple already had a son called Adam, who is five, and like all parents, they took for granted that their second child would be perfect too.
They knew something was wrong when Jack, now 20 months, failed the newborn hearing test in the hospital and they were asked to come back to the audiology department three weeks later.
Ruth, who works for Sunderland City Council, said: “I could tell there was something wrong – he didn’t jump or respond to loud noises like Adam had when he was a baby.
“Although we had an indication that there was a problem, we never expected it to be as bad as it was.”
After further tests they were told that Jack was profoundly deaf. He could hear 120 decibels, so if he stood on a runway and a jumbo jet went past, he would hear that at a normal level.
“We had no experience, so when he was diagnosed the first thing we wanted to know was what we could do to fix it,” explained Ruth. “But we quickly realised there wasn’t a magic operation and the condition would be permanent.
“Being told that your baby is deaf is heart-breaking and we had three months of crying, of being angry – it was a period of grief.”
The couple attended an event organised by the National Deaf Childrens Society when Jack was just 12 weeks and Ruth says that was the turning point. She said: “Jack was the youngest one there, so seeing parents with older children gave us hope for the future that he could still enjoy a normal life.” Jack’s condition was caused by genetics – both Ruth and Paul have a gene that, when it comes together, can cause deafness. They have since found out that there is a 25 per cent chance that every child they conceive will be deaf, but as with their eldest, they can still conceive a child with perfectly normal hearing.
Jack now has bilateral cochlear implants. These are surgically implanted electronic devices that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing. The quality of sound is different from natural hearing, with less sound information being received and processed by the brain. However, many patients are able to hear and understand speech and environmental sounds.
“Since he has had his implants six months ago it’s changed our lives,” said Ruth. “He can hear music and dance, which is lovely to see. He was really scared when he first got them as he hadn’t heard anything before, so he did cry initially, but he soon got used to it and now he loves it.
“It’s really nice to see him understand what I’m saying and hearing my voice. He’s trying to vocalise himself now too – the technology really is amazing.”
As well as his implants, Jack is also learning basic sign language as Ruth wants him to have the option of being able to take it further when he’s older if he wants to.
Although it was devastating and a shock when they first found out, as a family they are adjusting and Jack is just like any normal toddler. He was tucking into chocolate and running around with his brother Adam when I visited, completely unaware that he is different.
Lynn Dryden had her little girl Keira, who is now three, nine weeks early. After suffering from pains in her abdomen her partner John Ridley took her to Sunderland Royal Hospital where midwives suspected the baby was pushing on her bladder.
It turned out she was seven centimetres dilated and her baby was on the way.
“Because she was premature doctors did not know if there was any permanent damage straight away,” explained Lynn.
“They did the newborn baby tests and she did not pass the hearing test, but they said it could be because she still needed to develop.
“We had to keep going back for tests and eventually, when she was 18 months old, they realised she had moderate hearing loss. Basically, she can’t hear speech sounds.
“They think she can hear about 50 decibels, so she has hearing aids to help her hearing. Otherwise, when people talk, it just sounds like mumbling to her.” Finding out that Keira was hearing-impaired strangely was a relief for Lynn. She said: “Because she was premature she could have had so much wrong with her, she was just 3lb 15oz when she was born and we were just happy she survived.
“She was so small I didn’t dare touch her. She spent nine weeks in neo natal and I was always asking the nurses if I could hold her or touch her before I did because she seemed so fragile.
“It was totally overwhelming and I think I was in shock for the first few days.”
Although other people may not understand, Lynn feels they got away rather lightly with Keira just having moderate hearing loss. They still don’t know exactly what caused it – it may just have been being premature, but it definitely isn’t genetic as they have been tested and everything was fine.
She said: “It would be nice to know the reason but it’s not going to change anything. We just want to look forward and get her all the help and support she needs.”