Maisie's unilateral deafness: the struggle for support
Emma and David are parents to Maisie (4), who is deaf in one ear, and Freddy (5 months). Emma tells us about her struggle to get support for Maisie.
“After Maisie’s follow up tests when she was a few weeks old, audiology ‘forgot’ about her, so eventually I contacted them. By that time she was 18 months old and we were told she was at an awkward age for testing and they couldn’t do anything for her.”
So Maisie was booked in for another appointment for when she was two. By that time she was struggling to produce any speech, and communicated by making noises.
“Her playgroup suggested asking the consultant about speech and language therapy (SLT) but at the appointment the audiologist said no,” says Emma.
Finally, with the help of a health visitor, Emma was able to get Maisie into SLT. “It was really useful,” says Emma. “It taught us how to communicate with her.
We learnt not to ask her questions that make her respond in more detail. I’m a quiet person myself but SLT’s taught me I have to sit and talk to her because she needs to learn.”
Emma explains how Maisie wasn’t given a hearing aid at first. “Her speech therapist was shocked that they wouldn’t give her one. But our consultant said that children with unilateral deafness tend to do fine in life.
He did mention that there was a hearing aid for unilateral deafness called a Contralateral Routing Of Signals (CROS) hearing aid which would be an option for her; we said we were interested but he gave us an appointment to discuss it in a year’s time.”
"I’ve spoken to a lot of parents of children with unilateral deafness and the majority of them are struggling."
Emma returned home from this appointment feeling dissatisfied.
“That night I sent the audiology department an email about the fact that Maisie’s speech and communication aren’t progressing, copying in the speech therapist.
The next day, a lady from the hearing aid department phoned me, apologising about the lack of support that we’ve had, and made an appointment for us a week later.”
At the appointment, Emma was told that Maisie would benefit from a hearing aid, so when Maisie was nearly three she was given a bone-conduction hearing aid (sometimes called a BAHA) on a softband. They didn’t make moulds small enough for her to get the CROS aid.
“The BAHA really brought her speech on,” says Emma, “but she didn’t find it comfortable – she doesn’t like headbands and used to cry when I put it on her.”
When Maisie was four, Emma contacted audiology to see whether the CROS aid would be an option now. “They replied and said yes, we were due for it,” remembers Emma. “We went to an appointment next month and they did the moulds there and then.”
Although Maisie’s speech has really come along since she’s been aided, she’s still behind for her age. “She doesn’t have the same understanding that other children have,” says Emma. “You can have a conversation with her but she doesn’t know what you’re talking about.
She’s very shy when it comes to new people and doesn’t know how to communicate well with them at all. School just re-referred her for SLT.
“Maisie goes to a mainstream school and although she loves it, it tires her out because she has to concentrate more when people talk to her. After school when I try and talk to her she’s extremely grumpy. We’ll get home and she’ll fall asleep on the sofa.”
"Don’t give up if you think something’s not right."
“At Maisie’s last appointment I asked about getting Maisie a Teacher of the Deaf (ToD). I know another mum of a little girl with unilateral deafness – she’s always talking about their ToD and I asked her how to get one.
We were never offered one, and when I asked about it they said they’d send our details. We haven’t heard anything yet.”
Emma doesn’t think that unilateral deafness is taken seriously. “Professionals say that typically, children with unilateral deafness are fine and don’t need any help, but they’re not taking the time to assess the individual child.
I’ve spoken to a lot of parents of children with unilateral deafness and the majority of them are struggling.”
Emma has had to constantly chase the professionals to get the right support for Maisie, and she would advise other parents to do the same. “Don’t give up if you think something’s not right. Just because they’re professionals, it doesn’t mean they have the right answers.”