Tag Archives: Treacher Collins Syndrome

Becky Zingale shares how her daughter navigates Treacher Collins Syndrome and conductive hearing loss with her Ponto 3 through her blog

You might be familiar with the blog “The BAHA Mama”, a well-known resource for parents and families who have children with hearing loss and Treacher Collins Syndrome (TCS). The blog, which was created by Becky Zingale, follows her family’s journey of navigating TCS, hearing loss, speech therapy, sign language, and parenting.

Becky began writing around 10 years ago to document her travel experiences. Later, when she and her husband learned that their second daughter, Ariasha, had TCS, Becky focused her blog on sharing knowledge and personal stories with other parents.

“My husband is a marketing consultant and has empowered me to be a thought leader. I’m a great success story for what happens when you follow the advice of your marketing consultant (husband),” she says.

Ariasha, also known as “Little Lioness” and “PipSqueak”, was born with Treacher Collins Syndrome and microtia and atresia, just like her father Duane. She underwent cleft palate surgery in 2016 when she was sixteen months old, which is when they discovered her conductive hearing loss. Thinking Ariasha would follow in her father’s footsteps and wear the same bone anchored hearing device as him, she trialed his device first but experienced issues with feedback.

 
Through online Facebook groups focused on hearing loss like this one and this one, Becky discovered the Oticon Medical Ponto Bone Anchored Hearing System. All the information they received convinced her that Ponto was the right choice for her daughter.

They trialed the Ponto and Ariasha now wears bilateral Ponto 3’s on a softband. During the first few weeks of her wearing her Ponto, Becky noticed just how much it was making a difference in her ability to communicate.

“She had her Ponto for two weeks and I tried dropping her off at childcare. I thought the noise might be overwhelming so I decided she shouldn’t wear the Ponto, and she was really upset. It turned out that she had become so used to being able to hear for those two weeks, that she preferred dealing with a loud environment than not knowing what was going on. She has also become more social since getting her Ponto. Beforehand, when people would come over, she wanted to go to bed. We thought she was really introverted. But with her Ponto, now she wants to interact with people since she can distinguish sound, hear different voices, and has an idea of what’s going around her.”

As Ariasha continues her hearing loss journey, Becky documents everything they learn and answers common questions from parents online through informative blog posts and personal stories. One such post discussed a common question posed by parents – how to show a child to place their BAHS (Bone Anchored Hearing System) in a safe place to avoid it getting lost or broken.

“Sometimes Ariasha decides to change her clothing randomly in the middle of the day and her Ponto will end up in a pile of clothes. So, we created “Ariasha’s BAHS Box”, a safe place to put her Ponto. The other day she went upstairs to play and then came downstairs wearing a new outfit. ‘Where is your BAHS?’ I asked. She responded, in a very sassy teenager-ish tone, ‘In my BAHS box’.”

Learning about Bone Anchored Hearing Systems and advocating for Ariasha has definitely become a family affair. Ariasha’s sister Chloe, also known as “Monkey” or “Big Sis” on the blog, helps to check whether her sister’s Ponto needs new batteries and event sports matching headbands with her.

To parents trying to figure things out, Becky’s advice is to find a community. She says the online community has been very helpful with discussing things like speech therapy and how to get your child to keep their BAHS on their head.

“Hope is what the name Asha means. It’s my hope to inspire and encourage mamas in their journey to raise healthy, thriving families in spite of whatever challenges life brings.”

If you are interested in learning more about the latest addition to the Ponto Bone Anchored Hearing System – the Ponto 3 SuperPower – for yourself or your child click below:

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