"Nobody Suspected" -- A Parent's Perspective on Children's Hearing Loss Diagnosis

Helen Cotton-Leiser, a parent partner in NICHQ's Improving Hearing Screening and Intervention Systems (IHSIS) and Executive Director of the Hands & Voices of Oregon, shares her story of her two daughters' hearing loss diagnoses.

To read more about how NICHQ and the IHSIS project are improving hearing screening, please visit:
www.NICHQ.org/ihsis

Helen Cotton-Leiser, Parent Partner, Oregon: I spoke with my nurse practitioner and he observed my daughter, and he has a deaf stepdaughter, so I felt really

comfortable. And after the tubes were put in, she was responding to airplanes, but nobody suspected anything with her.

I mean, she would crawl away and you'd call her name, and she'd turn around and look.

And he observed her and he said, I really have no idea, but we need to get her tested.

And so he set up for us in a different clinic and spoke with that audiologist, so there were no blinking lights.

I mean, you could tell right away. And I could see through the booth watching that she was not hearing anything.

And then my youngest, before we knew with her, she would cry and I would-- before she could see me, start talking to her.

And I swear she calmed down. And it was really confusing because I was paying attention and a lot more aware.

And my husband and I were going around and around, like I think she can hear.But then I also think she can't.

We actually ended up going a private route because the public route was so frustrating from the very beginning.

And I couldn't even just kind of get someone to explain how
to get from A to Z. And it was very clear that-- at least I
walked away feeling like i wasn't going

to be allowed to be the parent and be equal at the table.

From the get-go, I was told what I had to do, that this was how it was done.

And so that's a huge driver in how I am approaching things with this project.

I see that they really want that parent perspective.
It's kind of nice, actually. Because there are times

when we would just feel like we're just a parent, but we're not.

We actually have some really good input, even if it's just our own story.

One of the things that we're going to introduce into the project is the midwife community.

We have about 700 or more-- it's actually over 700 births a year that are out-of-hospital births,

and a large percentage of those babies don't get any newborn hearing screen.

There's an emotional connection with our providers and we need to know that they're current with deaf education and that they're able to talk to us about

what our options are, and that they're open to that and they're going to listen to us.

We have people doing this for 20 years, but they're using a model from 20 years ago.

And that's not the model that's serving our kids today. Our kids are just deaf or hard of hearing. And with the right tools and the right intervention,

they can go off and do anything. But they need the right stuff from the very beginning, and so do the parents.