Tag Archives: Goldenhar Syndrome

Finding Ear Community After Enter a World of Uncertainty

In honor of the amazing connections that happen at Ear Community’s Microtia and Atresia Summer Picnics, we’ve asked attendees to share their experiences with you here on our blog. This week, you’ll hear from Shannon Katuszonek, a mom who is forever grateful for finding her strength through Ear Community.

Here’s Shannon to tell her story.

We had no idea my daughter, Ava, had a condition. When she was born it was quite the shock. As if learning to understand what her little ear meant wasn’t enough, she was our first child, so we had little frame of reference for newborns in general.

So, we took in whatever information the doctors gave us. We knew she failed the newborn hearing screening test. Then, our Microtia Pediatrician started telling us about the other things that could be wrong with her.  “She could have Goldenhar Syndrome, a heart condition and more. But, we’ll just wait and see how she develops.”

There we were…

You’re looking at this beautiful little baby that you’ve been waiting for, and now you’re so overwhelmed. You can’t enjoy the moment, because you’re so worried about all of the things that might happen.

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