When new mum Sarah found out her 8-week-old baby, Jessica, was profoundly deaf – it came as a shock, considering there was no deafness in either her, or her husband’s, families.
And, despite failing all her newborn hearing test, the subject of deafness had never really been broached by the audiologists performing the exams.
“It wasn’t until we had the final hearing test that we confirmed that Jessica was deaf,” she told MFM in a chat about the experience on the phone.
“She failed all her newborn hearing screens – but each time we had a test they kept saying, ‘oh, that’s very common’. No one actually ever said she might be deaf.
“It was all a bit crazy because we were first-time parents, we didn’t know what to expect, and we had all the things that normal newborn parents go through – sleepless nights, feeding, all that.”
In addition to dealing with the emotional rollercoaster of being new parents, and the surprising news, Sarah and her husband quickly faced a decision: do they want to consider cochlear implants for their 2-month-old?
(For those who don’t know, a cochlear implant is an electronic device that send sounds signals to the brain, basically replacing the function of the inner ear, which no longer works – instead of a hearing aid, which simply makes sounds louder.)
“The audiologist who did the hearing test confirmed she had a profound deafness. She said: ‘We’re going to visit the hearing aids, but, to be honest, with the level of deafness she has, she’s probably not going to be able to get much benefit from them, so I’m going to do the cochlear implants straight away if you’re happy with it.’
“We sort of had to grieve for the child we had imagined. You have this picture of what your child’s going to be like and then all of a sudden – the deafness.
“Because we didn’t know – obviously hindsight is fantastic – what her future would hold, or whether she’d be able to talk, whether we would be signing, so we did have to grieve a bit. At the time, it felt very difficult.”
After some time to process the life-altering news, and weigh up their options – and ask the audiologist a lot of questions – Sarah and her husband had made their decision. They would go ahead with a referral for cochlear implant surgery.
Typically, it takes about 6 months – 1 year from the referral appointment to the actual operation. For Sarah’s little one, it took about a year.
So when her 2nd baby, Penny, was born deaf 3 years later – Sarah was well versed in how things would play out. This time, the couple had been prepared to have another deaf child – after a genetics expert told them it would be highly likely.
“With cochlear implants it’s a little bit conscientious, because the deaf community can feel like they’re trying to cure deafness or eliminate deafness,” Sarah admits.
“We’re a hearing family, and we wanted to give our girls the choice to hear as well, and it’s better to get the implants in as soon as possible.
“We’ve always been supportive of the fact they are deaf. It’s their identity, and if they turn around to us and say ‘do you know what? I don’t want to hear anymore’, that’s fine, we can take the implants out and they don’t have to wear them.
“But I would hate for them to turn around and say, ‘why didn’t you put us through the operation when we didn’t have to remember it?’ I’d rather say we were doing it to give you choice, rather than we didn’t want to make the decision.”
At the end of the day, you have to make the right call for you, your child and your family ?
Jessica is 7 years old now, and younger sister Penny is 4 – and both girls are wearing their implants and doing well, their mum says.
Though they’re not a typical family in every respect, and there are some adjustments that those around the girls make.
“Jessica’s in school, she wears her implants all the time unless she’s in the bath or asleep. The teachers wear radio aids, they wear microphones, so their signal, the speech, is beamed straight into Jessica’s implant so she can hear them a bit more clearly.
“Penny’s a little bit behind her peers – I think it’s second child syndrome, unfortunately. We weren’t able to concentrate quite as much on her as she needed.
“But she still does really, really well. We can still have a conversation, and she can just about understand what we’re saying.
“We do very normal things, they go roller-skating, we go dancing, so on the surface we don’t do a lot different to any other family, but there are a lot of things that we do differently.
“We make sure our house is a quiet house, we don’t have music playing in the background, the TV’s not always on, we do naturally speak a lot more clearly, explain things a lot, repeat things over and over again to make sure that they’ve both got them.
“It’s not until we have playdates with other families who have hearing children that we realise that we do things quite differently.”
So, what does the future hold for Sarah’s girls? Well, it’s the teenage years to come that most concern her…
(Perhaps one thing she has in common with most parents ?)
“The best thing is to try not to think about the future, really, to be honest,” she confesses, admitting the family approaches the girls’ needs with a day-by-day approach.
“But when they become teenagers, and perhaps they don’t look after the implants as well as they should, lose them or run out of batteries…
“We do talk to them about being deaf, we try to help them be confident about it, and they’re OK at the minute, but I just know one of them’s going to have a big wobble at some point, and be very upset, or have poor self image…
“We’ve just got to manage it.”
If you’re going through something similar – and want to speak to Sarah or someone who’s been in the same boat, reach out to HearPeers. We spoke to Sarah as part of MED-EL‘s Greatest Gift campaign