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Isla's deafness and cleft lip and palate

Photo: Isla's story

Isla (1) was born with a cleft lip and palate, which was also linked to her deafness. When it came to options to help her hear, parents Becky and Tim decided on a bone conduction hearing aid.

The screaming from the back seat became shrill and frantic. Becky pulled the car over and twisted round so her baby girl Isla could see her face, and smiled to calm her.

“Isla would panic because she couldn’t hear me and in the car couldn’t see me either,” says Becky. “With her health problems, we spent hours driving to hospital appointments and it was always stressful and upsetting.”

Becky and husband Tim found out during pregnancy scans that Isla had a cleft lip and palate. Doctors said she might have glue ear and be deaf because of it. “We were in shock about the cleft,” says Becky. “Isla, like our older daughter Isabelle, was conceived through fertility treatment and I refused an amniocentesis (a test for genetic conditions in an unborn baby).

"We already knew she had a struggle ahead with speech because of her cleft; deafness would make this worse."

“The doctors said little about the deafness as there were more urgent issues such as feeding because she wouldn’t be able to suck, so I pushed it aside.”

Each scan seemed to reveal a new problem. Fighting her fears, Becky tried to prepare for the birth. “I read up on cleft lip and palate,” she says. “But I couldn’t look at photos. Once Isla was here though and we could see her it was fine, a relief.”

Isla had breathing problems and spent her first two weeks in special care. It was a worrying time for the couple but finally she stabilised and progressed well, being tube fed.

When she failed her newborn hearing screening, she was referred for an Auditory Brainstem Response (ABR) hearing test at four months old and diagnosed as mild to moderately deaf in both ears.

“It was really upsetting,” says Becky. “I’d suspected she couldn’t hear much; she didn’t respond even when our dog barked at the doorbell. I began to worry what deafness might mean for her. We already knew she had a struggle ahead with speech because of her cleft; deafness would make this worse.”

Doctors suggested grommets to help the glue ear behind her deafness, bone conduction hearing aids (BCHA), or just waiting to see if the glue ear cleared up. “It’s hard to find accurate information but I found lots on the National Deaf Children’s Society website,” says Becky.

“We decided against grommets – she’d already had surgery at four months on her cleft lip and would go through more to repair her palate. Doing nothing wasn’t an option.

Speech would be challenging enough with her cleft so it was important she hear right away for early language development. The BCHA was non-invasive and immediate so we chose that.”

Last November Isla got her BCHA – and Becky and Tim couldn’t have been more thrilled.

“Her reaction was fantastic!” says Becky. “When we spoke, her little face lit up, and with each sound her eyebrows shot up higher!”

"We’re very positive about Isla’s deafness, we’re managing it and she’s making good progress."

Before, Isla didn’t respond to anyone calling her but with the BCHA she turned to sound, and was aware of everything going on around her. “I feel it’s taught her to listen, to be aware of where sound is coming from – before she took no interest,” says Becky.

“Isla’s happy for me to leave her on the floor with her toys now; it must’ve been such a lonely feeling for her before. And car journeys aren’t such a nightmare! She pulls her hearing aid out sometimes so I distract her with a toy or have a break and try again. I’ve also bought a fiddle necklace for me to wear which stops her playing with her hearing aid and feeding tube.”

Isla had surgery to repair her palate at eight months and now at one year old she’s starting to babble. “She enjoys babbling. When Isabelle takes a toy off her she shouts babble at her!” says Becky.

In the future Becky says they’ll reconsider grommets, though with another operation looming to repair Isla’s gum, the couple are reluctant.

“We’ll see,” says Becky. “Isla’s very sociable and responds really well to people, though often people don’t realise her band is a hearing aid, they think it’s a thick Alice band I’ve put on her.

“She’s started crawling so that’ll be another challenge, getting her attention. At some point things will settle but Isabelle also has health issues related to the same genetic condition Isla has, so between them we’re forever at hospital appointments. But this is their normal! I try to make it as fun as possible.

We’re very positive about Isla’s deafness, we’re managing it and she’s making good progress. The BCHA has made a huge difference.

“It’s a big decision, a balancing act – and even then you’re uncertain you’ve made the right decision. Would grommets have cleared the glue ear? But then with a cleft the Eustachian tubes are usually not formed properly so the glue ear might not clear up anyway. You just have to get the information, decide and go with it.”

You can read about Isla on Becky’s blog*

*Please note we promote blogs that we think might be of interest to our readers but the opinions expressed in them are not necessarily our own.