Being twins is a powerful factor
As he hears his mother, Katie, call, “OK, it’s bath time,” George Whiting whips his head round and grins at her, then taps on his twin sister Ella’s arm to attract her attention and signs the words for her.
Both toddlers developed a profound hearing loss within months of birth and have received cochlear implants (CI) in both ears, but Ella’s were implanted a year after her brother’s and she has only had what she calls her ‘ears’ for a few weeks. While George, who received his implants at 18 months, is speaking confidently in proper sentences and starting to understand about jokes, Ella is still making sense of the world of sound – but she’s catching up fast.
Their parents – Katie and James, who live near Leeds, in Yorkshire, UK – are astonished at Ella’s progress. Two months after implantation, she is doing as well as George was after six. Being twins, she thinks, is a powerful factor.
“There’s a lot of the ‘twin thing’ going on, which is why they are so confident,” laughs Katie. “Ella loves being the same as George. She idolises her brother and signs that she now has ‘ears’ like him. His favourite words are her first words – ‘more’, ‘Ella’, ‘baby’ and ‘daddy’!”
Hearing loss treatment in the United Kingdom
As the two live-wire tots exchange glances and shoot behind a chair to escape bath time, Ella can be heard uttering some of her favourite words, while George giggles and repeats them to her.
At home George takes the lead, but outside the house he hides behind the more socially confident Ella. As far as Katie and James are concerned, they are now increasingly thinking of them simply as ‘normal’ kids – with the added twist that when Ella annoys her brother too much, he takes off his processor and ignores her.
It’s been a whirlwind experience for university PR Katie and IT specialist James. They felt unprepared for having twins, fought an uphill battle to have their children diagnosed as deaf and faced a further struggle to ensure that both twins had access to the same CI technology.
Shock diagnosis: far from having normal hearing
Ella was diagnosed, after much parental pressure, as mild to moderately deaf at three months old and given hearing aids. George had been said to have normal hearing, so his parents weren’t worried, but when he was around six months old, they realised that he didn’t react to the banging of a drum. It took a further six months for Katie and James to gain the shock diagnosis that far from having normal hearing, he was profoundly deaf and a candidate for a CI. He had his operation in Bradford, UK, in December 2012 at 18 months.
As all attention was on George, it took a while for Ella’s parents to register that she wasn’t speaking. At some time during 2012, her hearing had dramatically diminished. Repeated tests proved normal, but after determined efforts from her sceptical parents, a senior audiologist agreed to carry out further tests in autumn 2013 and came up with the devastating news that Ella, too, was profoundly deaf. She was borderline for a referral for a CI, but ended up being judged eligible for implants for both ears because her sibling had them. The operation took place in May 2014.
A chance to achieve thanks to four CIs
“We now feel we are on a level playing field,” says Katie. “Both children have implants, which we feel has given them the chance to be ‘normal’ and to achieve as much as any other child.”
The aim is to enrol them into a mainstream primary school at the usual age of four, but the toddlers are currently attending a school for the deaf in Boston Spa, to give them intensive language input in order to prepare them.
“I feel that George and Ella are now in a position to achieve their true potential,” says Katie. “The CIs have given me total confidence about their future.”
Every morning the two children receive their audio processors over breakfast, with excitement. Katie talks to them as she serves their food and goes to great pains to help them with pronunciation. Being the mother of deaf twins was a shock, but the support she had from the Elizabeth Foundation charity has been vital.
The charity provides education services, help, support and encouragement to infants and preschool children with hearing loss and their families. It is focused on the right of every deaf child to have the opportunity to learn, listen and talk.
Lower educational costs after cochlear implantation
Emotional support is necessary
The local Elizabeth Foundation support group was a ‘lifeline’ to Katie. It meant she was finally able to meet other mothers in the same position as herself and was given weekly input by experts about the best ways to give her twins speech and language therapy.
So it was a blow, after 18 months of social and practical support, to find that the Elizabeth Foundation was closing locally. Katie and the other mums were so distressed that they set up an informal group via Google, to share emotional support and even occasional childcare.
One important area of sharing was discipline. For instance, how do you persuade your kids to eat when they have no concept of ‘four more spoonfuls’? Or how can you get them to give up their dummies by saying they’ve been taken away by Father Christmas (as Katie’s friends did with their hearing children) when your child has no idea who he is?
“There’s nothing like chatting to a mum with a deaf child,” says Katie. ”You get so fed up with having to explain everything to parents of hearing children. It’s good to have a friendship that’s borne out of a shared experience.”
Help for parents of deaf children
The Elizabeth Foundation offers a wide range of services for UK deaf children (from birth to five years) and their parents. Visit www.elizabeth-foundation.org
The John Tracy Clinic for preschool deaf children is dedicated to providing worldwide parent-centred services to young children with hearing impairment and offering affected families hope, guidance, and encouragement without charge. Louise Tracy, wife of actor Spencer Tracy, founded the clinic in 1942. Visit www.jtc.org
MED-EL can provide you with further information about hearing loss in children. Visit medel.com to read why parents choose MED-EL’s technology. MED-EL can also help you to get in touch with clinics and local support groups.