Our Journey with Auditory Neuropathy Spectrum Disorder (ANSD): One Family’s Journey

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When our daughter Skyla was born, we became the proud parents of a healthy baby girl! During her first months, she had a series of “inconclusive” hearing tests. After a referral for follow-up tests, she was identified some weeks later with a profound sensorineural hearing loss in both ears. A lot of the information just flew over us at that point – it didn’t really matter to me, I just knew that Skyla was profoundly deaf.

Over time, we learnt that Skyla had Auditory Neuropathy Spectrum Disorder (ANSD), a less common form of hearing loss. This was 2008, and ANSD was a relatively new term in the world of hearing loss. Even now, it is still understudied. We learnt there was a broad spectrum to the diagnosis, and that every child with ANSD may be different. I interpreted the term ANSD as being a fancy term for something difficult to explain.

She got her hearing aids quickly and we met with the early intervention providers to select a program that would fit with our family. We provided input at every opportunity; reading, talking and narrating through our day-to-day activities. Our priority for our daughter quickly became getting her access to sound and giving her hearing.

Skyla’s CT / MRI scans were unclear and seemed to indicate that she did not have an auditory nerve. We were therefore advised that a cochlear implant may not work. We didn’t want to give up this opportunity just yet though. Skyla had another set of scans and this time they produced clearer images of auditory nerves. (Bundled or compromised nerves was the term offered as the cause of her hearing loss). Given the profound level of hearing loss, Skyla was implanted with two cochlear implants at the same time when she was 16 months old.

Afte 2 years of really committing to communication and spoken language development with insufficient progress, it was suggested to us by many people involved in our services to consider a change in communication modes. We felt bonded with our daughter, but the lack of language and communication was causing frustrations and difficulty with attachment. I was reaching out to various organizations by this time, and we began to provide Skyla with a combination of auditory and visual cues, and sign language to give her as much information as we could. This not only helped Skyla immensely at that time, but continues to be a communication-saver when she doesn’t wear her implants (for example, in the afternoons when she has “listening breaks”, in the bath, while swimming or at bedtime).

It felt like many professionals seemed to want to put a deadline on progress, but we’ve learned it is better for us not to do this. Our daughter will progress on her own schedule, and we will provide her with what she needs along the way, re­evaluating as we go. For example, when the time came that we wanted to learn American Sign Language, our intervention service coordinator was able to help put the services we needed in place. I would encourage other families to keep giving your child with ANSD as much access to auditory input and language as possible. Enjoy the time with your child, sing together, dance and laugh a lot! Your unconditional love for each other will carry you through this tough journey in the early days.

Today, Skyla is an active 6 year old in a mainstream school involved in sports, dance and swimming. She is learning to play the violin after showing interest in it. I would encourage other parents to give your child every opportunity possible, with no limits on what they can do. We as parents have many more decisions and work to do in modeling and supporting our children in self-advocacy – let your child take the lead in whatever they enjoy doing.

Update- Families looking for more information about ANSD can find it here:  http://www.phsa.ca/bc-early-hearing/Documents/ANSD%20Information%20for%20BC%20Families.pdf

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