New generation of children benefiting from newborn hearing screening
Nicole Rooney (4) was diagnosed with a permanent hearing impairment at birth
Nicole Rooney (4), who is deaf, with her Mother Alyson Russell and sister Hazel (12) and dog Charlie at their home in Skryne, Co Meath. Photograph: Alan Betson/The Irish Times
Nicole became one of the approximately 100 infants per year who are diagnosed through this programme with a permanent childhood hearing impairment when she was screened at birth in the Rotunda Hospital, Dublin. She had hearing loss in both ears, which was classed initially as “mild to moderate”.
Describing the newborn screening as a “game-changer”, Brendan Lennon, the head of advocacy with the national deaf charity Chime, says if children are diagnosed with hearing loss by three months of age, they get hearing aids straight away, and may go on to get cochlear implants by one year, ahead of the critical language development window of one to three years of age.
“It was a heartbreaking diagnosis to get but we were so thrilled she was born because she was IVF,” says Nicole’s mother, Alyson Russell. She and her husband Cathal, who live in Skryne, Co Meath, had decided to try for another child after their eldest daughter, Isabel, died of cancer nearly 10 years ago at the age of six. There is an eight-year gap between Nicole and her older sister Hazel (12).
She has three words but she’s a great communicator; she communicates with gestures and facial expressions and she has learnt to lip-read
An audiologist confirmed the hearing loss when Nicole was six weeks old. The couple were told that their baby could hear men’s voices better than the higher pitch of women but that she would miss the ends of some words and would need speech therapy to address that.
Nicole was fitted with hearing aids right away but her hearing loss was not “bad enough”, says Alyson, to get cochlear implants. Although, if she lived in another country such as Australia or Sweden, she would get them.
“She speaks [now] like my other girls would have spoken at two. She has three words but she’s a great communicator; she communicates with gestures and facial expressions and she has learnt to lip-read.”
Nicole’s name went down on the waiting list for speech and language therapy [SLT] when she was 18 months and, although she was seen about a year later, Alyson believes it was a waste of time.
“The problem I have is that primary care speech therapy in the HSE is only for hearing children,” she says. There seemed to be no allowance for the fact that Nicole couldn’t hear properly.
“It was very much tick the box, this is what I have to do, she’s not doing it. I could see time wasting on one child and one therapist, but it is obviously happening repeatedly,” says Alyson.
Then she heard about audio verbal therapy (AVT), a specialism in working with children with hearing loss. The first person on this island to qualify in AVT was Rosie Gardner, who is based in Northern Ireland but also works with families in the South.
During lockdown Alyson won, through Chime, a scholarship for an online course for parents with the renowned John Tracy Center in Los Angeles (named after the deaf son of actor Spencer Tracy, whose wife, Louise Treadwell Tracy, founded it in 1943). She says she learnt some great AVT strategies.
If all is going her way it’s grand but if it’s not, like a change in situation, you can have ructions
Any SLT session with a young child is really about educating parents how to teach their child to talk, she points out. “It’s all to do with work at home. That is what I was willing to do. We put in the time and she is so good. She has leaped very quickly, which gives me great hope.”
As Nicole has benefited from another course of SLT since their first, unsatisfactory experience, Alyson stresses that “I am not saying every speech therapist in the HSE is no good”, but she says it would be “amazing” if AVT could be available through the public system.
Meanwhile, the latest speech therapist to see Nicole has pinpointed some behavioural issues, which as parents they had thought might have been down to her being the youngest child and their tendency to give her what she wants. “If all is going her way it’s grand but if it’s not, like a change in situation, you can have ructions.”
The morning we talk, Nicole has had an assessment with Enable, for children who might be on the autism spectrum. She is borderline so it is hard to know, says Alyson, “and doing the assessment over Zoom doesn’t help.” Nicole may be on the spectrum, or have another language delay that is not due to her hearing.
“Hearing loss can overshadow other things and they are missed,” adds Alyson. “If there is something else underlying, I would like to get to the root of it.”