Hannah Teed

[Music]

(In a house, a blond-haired girl plays in a ball pit.)

Ricky Teed: Were you hiding?

Hannah, she's our second child and she was the one born with CHARGE Syndrome. There are physical limitations that come with her diagnosis. And the CHARGE Syndrome has been what makes her deafblind.

(A title appears against a shimmering white background: Living DeafBlind in Iowa.)

(Hannah sits with her mother and father.)

Samantha Teed: Hi, my name is Samantha Teed and I'm here with my husband Ricky Teed.

Ricky: We're proud parents of five kids.

Hannah Teed: Hi, my name is Hannah and I'm 11 and I'm deafblind.

(Photos show baby Hannah in the hospital.)

Ricky: So, Hannah was born to us and right away there were some issues. And so the doctors were taking care of her and running a lot of tests on her. One of the doctors was able to diagnose Hannah at two days old with CHARGE Syndrome. And because of that she is deaf and she is blind, which gives her the deafblind diagnosis among other sensory losses that she has.

Samantha: In the beginning it wasn't really that we were focused on interventions of what can we do for her hearing and her vision, but what do we need to do to keep this child alive, because she has got a heart condition and this and that.

(Samantha turns to Hannah.)

Samantha: Anything you want to share with us about your life or your family?

Hannah: I was a very small baby, like very tiny, I had to have heart surgery. That's why I have that scar on my chest.

Samantha: That's right. What else?

Hannah: And by the time I turned 6 months old I started using Sign Language.

Samantha: Yeah. Can you tell us about your hearing?

Hannah: I don't really hear that much with my left ear when I don't have a hearing aid on. But I do if I take this one off and I still can hear because of my right ear hears much better.

Samantha: Right, because you're considered deaf in your left ear and you have moderate hearing in your right ear, right?

Hannah: Yep.

Samantha: Yeah. And what are some other ways you communicate? What did we use first to learn how to communicate?

Hannah: Sign Language when I was only 6 months old.

Samantha: And do you communicate with Sign Language for your friends that are deaf?

Hannah: Yes.

Samantha: And how about when you're learning at school, do you use Sign Language?

Hannah: I use my voice for people who don't know Sign Language.

Samantha: And so you can do both, you speak and you sign. Do you prefer to speak or sign when you are talking to others?

Hannah: I prefer to speak.

Samantha: To use your voice.

Hannah: Yeah.

(Hanna rides an adaptive bicycle.)

Samantha: For your vision do things need to be far away or close?

Hannah: Close.

Samantha: Why?

Hannah: Because I can't see far away.

Ricky: And how close do you need like a book when you're reading?

(Hanna holds her hand in front of her face.)

Hannah: This close.

Ricky: Yeah, about four inches.

Samantha: And do you -- what type of equipment do you use to help you see better when you need to?

Hannah: I use a globe.

Samantha: So what does your globe do?

Hannah: It makes things bigger.

Samantha: Mm-hmm, like a magnifier, huh?

Hannah: Mm-hmm.

Samantha: And then what does your mat connect to? What do you use that for at school?

Hannah: To blow things up.

Samantha: It blows things up.

Hannah: Yeah.

Samantha: You can zoom in and you can make things bigger.

Hannah: Yeah.

Samantha: It's kind of like your eyes in a classroom, huh?

Hannah: Yeah.

Samantha: Yeah. Anything else? What are some of your favorite things to read about or learn about? You like maps.

Hannah: Yeah.

Samantha: Why do you like maps?

Hannah: They take me somewhere.

Samantha: Because they take you somewhere? That's right, they do, don't they?

(Hannah stands on a beach at dusk.)

Samantha: We have never let the diagnosis define her. Hannah is not her syndrome. And even though she has these things that make life more difficult they don't define her, she defines herself.

(Hannah climbs a jungle gym.)

Samantha: She is in fifth grade this year. With the assistive technology and devices that she has she is able to test out and be at the level that her peers are, so similar to somebody her age without a disability.

Ricky: Hannah being at grade level with her peers hasn't been easy. But she has been doing therapy since just a baby and she can hear, she can talk to us and have conversations just as a hearing person can, but she does struggle. And it is fatiguing for her. And so a lot of people they'll see her and they don't understand why she needs an interpreter or they don't understand why she needs certain accommodations. But because of those accommodations that we have been able to get for Hannah she has been able to excel in life. And so we struggle and it's a continual fight to try to keep those accommodations. And fortunately we have an excellent team around us that helps us and supports us in that.

(Hannah is in an eye clinic.)

Samantha: In 2014, we found out that she was losing some hearing in her right ear, which is typical. They can have continued vision or hearing loss. Her eyes are at risk for retinal detachment. She is training with a deafblind cane so that she has that accessibility as she needs it when she needs it.

(Hannah wears eye exam glasses with a smile.)

Ricky: And I think with all that said, our kids, all her siblings, they see her and they understand and it can be hard, well it is hard on them sometimes because it does give them extra responsibilities. It is a family effort and I think we're making it work right now.

(Hannah bakes with her siblings.)

Samantha: Our new family motto is hard moments don't make bad days. I do feel like Hannah is kind of the glue that keeps us all close and helps us remember what is important in life.

(Hannah rides a bicycle.)

Ricky: When Hannah got her adaptable bike, that was a tremendous day and she didn't see herself any different from her siblings that day because she was able to ride her bike next to them. So all these normal milestones that we just have grown to expect, when you go through these struggles they are even more tremendous.

(Samantha hugs Hannah.)

Samantha: We don't have time to worry about the little things in life that sometimes we can get caught up in. We also have to be okay with what is happening right now and in this moment. Especially at the beginning of Hannah's life there were a lot of things that we just had no control over.

(Hannah jumps in a pool.)

Samantha: So as far as the future is concerned, I do know that she does not intend on living with us. She has made that very clear. We can come visit her. She, at this point in her life, is fully intending to have a family and wants nothing more than to be a mother. And I hope that that will be true for Hannah. She is doing very well. She seems to be able to make choices for herself and move forward and she's starting to cook, she's starting to take lots of responsibilities. So we have a very hopeful outlook for her future and what that will be. And we're okay with whatever it may be.

(​​A photo shows Hannah eating a chocolate ice-cream cone.)

(A title appears against a shimmering white background: Living DeafBlind in Iowa.)