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Rebekah's 'hearing headband'

Born with microtia, a condition which means the ears are underdeveloped, Rebekah has had many ups and downs in her three years.  But with the support of the National Deaf Children’s Society (NDCS), her future is more positive than her parents, Jennifer and Gordon, could have ever hoped for.

Rebekah was born at 35 weeks and weighed 4lb 4oz – her ears were small and folded over – one with a small ear canal, the other with no opening at all.  She also had a cleft of her soft palate, causing feeding issues, and initially this took priority to enable Rebekah to thrive, leaving her parents unsure whether she was ever going to be able to hear their voices.

“For both of us it was tough coming home with a child very different from our expectations.  We were very much in the dark, no-one had any answers for us,” said Jennifer.

It was during this time that they were put in touch with an NDCS family officer, Barbara. “Barbara was absolutely amazing, she turned up and said ‘sorry to add another person to your list of appointments’ but how wrong she was!  It was wonderful that she would come to us, not me having to pack up a tiny baby in between feeds and drive off somewhere.”

It was another four months before Rebekah was able to see a specialist consultant who confirmed that her condition was microtia - he sent her for comprehensive hearing tests to find out exactly how much she could hear.  Incredibly, the results showed her hearing loss to be ‘moderate’ (there are different degrees of deafness, which are often described as mild, moderate, severe or profound.)

At six months old, Rebekah had a ‘bone anchored hearing aid’ fitted – a hearing aid attached to a soft hairband near her right ear which has the small ear canal.  Sound is transferred directly through her skull to the inner ear to enhance hearing.

“They did a hearing test with the aid fitted and it was normal!” says Jennifer.  “It was an incredible day, to see her responding to normal sounds she couldn’t usually hear was fantastic.”

At 16 months, the family attended their first NDCS Family Weekend – one specifically for families with a newly diagnosed child – where they gained information on a range of topics including communications, behavioural issues and education.  They also met other families going through similar experiences.

“For the first time we felt normal – we didn’t have to explain about anything, or answer any questions about her hearing aid,” said Jennifer.

But it was when two young adult role models spoke that the couple felt the biggest impact, and reassurance.

“To see these profoundly deaf adults with professional careers, enjoy life as ‘normal’ was wonderful.  It showed us a light at the end of the tunnel – it gave us hope for Rebekah’s future.”

The family plan to attend regular courses with NDCS, a Pre-School Family Weekend later this year and they continue to have the support of their Family Officer.  Your wonderful donations to Childlife enable them, and other families going through the same challenges, to get the support they need – thank you.

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