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Severe-to-Profound Hearing Loss, Mirror Image Twins, and Hearing Aid Designer Jewelry: Interview with Hayleigh and Rachel Scott

Severe-to-Profound Hearing Loss, Mirror Image Twins, and Hearing Aid Designer Jewelry: Interview with Hayleigh and Rachel Scott

November 02, 2010 Interviews

Douglas L. Beck, AuD, speaks with 11-year-old entrepreneur, Hayleigh and her mom, Rachel, about charitable giving, hearing aid charms and decorations, ear mold tubing twists, and gifts for adults and children who wear hearing aids, and more.

Left to right: AJ, Hayleigh, Vienna and Sarah Scott

Academy: Good afternoon, Hayleigh. It's great to speak with you again.
Hayleigh: Hi, Dr. Beck. Nice to speak with you, too!
Academy: Hayleigh, I want to start by encouraging all our readers to visit your Web site to see the amazing, beautiful, and thoughtful jewelry you make. And because I want to make it so easy to find your Web site, I'm going to place it here at the very beginning of your interview….just to make it easy to find: www.hayleighscherishedcharms.com. And then we'll talk about how this came to be, because you are a remarkable young lady. First of all, how old are you and what grade are you in?
Hayleigh: I am 11 years old and I am in my last year of elementary school. Next year, I'll be in junior high school.
Academy: And do you have any brothers or sisters?
Hayleigh: Yes, I have two sisters and one baby brother and three dogs, and I really like horses, too.
Academy: Very cool. And I think one of your sisters shares a very special relationship with you?
Hayleigh: Yes. That's right, my sister, Vienna, is my mirror-twin. So that means we have opposite identical features, like left versus right handedness, and our hair naturally parts on opposite sides.
Academy: That's really fabulous. Of course being an identical twin is pretty unusual, only about one of every 300 births includes a twin, and then to be a mirror image twin is something like one in 1,200 births—so you girls are pretty special. Do you do all the sneaky things we always here about; like confusing your teachers and friends?
Hayleigh: Not so much. We actually are in different classes, so our friends and teachers usually only see one of us at a time. But we were in the same pre-school class, and that got a little crazy.
Academy: I can imagine. Well, separate classes probably does make it easier!
Hayleigh: Most of our friends can tell us apart most of the time, because there are different aspects of us that don't look like, but in general, we're pretty identical.
Academy: Okay, got it. I should mention you've been in the jewelry business for a few years now and you have your own Web site so people can view and buy your earrings, pendants, charms, and all manner of hearing aid decorations and art. So, just to be sure, when did you start your business?
Hayleigh: Well, I came up with the idea when I was five while drawing pictures at my grandma's kitchen table. My mom came in and she asked what I was doing, and Vienna was there, too, and I replied that we were drawing charms for my hearing aids, but it took a year or two after that until we started making them. My parents wanted to hide my hearing aids but I wanted to make them shine!
Academy: Seems the best ideas always start at the kitchen table.
Hayleigh: Yes, I think so, too. But getting back to the Web site, we only opened the Web site a year ago, but we've also done craft fairs so we have a lot of experience.
Academy: Hayleigh, these hearing aid charms are really beautiful, and frankly, they seem very inexpensive—I think you could raise your prices and they would still be pretty cheap compared to other jewelry of this quality! I noticed some charms go right between the earmold tubing and the hearing aids, and I think you told me you have brand new tubing decorations coming out pretty soon?
Hayleigh: Yes, we're creating and producing them now, they're called "tube twists." My sisters and I are working together to make the tube twists. They each work on parts of the business now too. My sister, Sarah, make the bracelets, she's eight years old, and my sister Vienna makes the necklaces, she's 11, too! I still make all the charms and we all work together on sister set ideas.
Academy: So you've got everyone involved and it's a family business?
Hayleigh: Well no. Not my baby brother.
Academy: Good point. And so the Web site has a lot of wonderful products for children and adults wearing hearing aids, and of course there are lots of other fine jewelry pieces such as dragonflies, snowflakes, lady bugs, dog and animal art works, too. On your site, it indicates you can order any of your products as pierced earrings or clip-ons. Of course, as I have three teenage daughters, I notice these things! So, you serve the hearing impaired and the hearing. This is pretty good information as the holiday season is getting pretty close and lots of people are going to be buying gifts pretty soon!
Hayleigh: We have made a lot of new charms for the holidays that will be on the site soon. My mom used to wear the same earrings we did sometimes, so, I really like it when a mom gets her daughter hearing aid charms and then gets the same set for herself as pierced earrings. I think it makes them feel more connected.
Academy: Hayleigh, if you don't mind, I'd like to mention you just won an amazing award in the Student Category of Oticon's Focus on People Awards—and you've donated the monies to two charities.
Hayleigh: Yes, that was really neat. My mom and I flew out to Oregon to accept the award. I gave $700 to the Hope School in Nairobi, Kenya, because my mom did missionary work there and it's a place where they have just about the most poverty in the world, and then I gave $300 to our local pre-school for hearing impaired kids, the one I attended when I was a little kid.
Academy: Wow. That's fantastic. I want to also note that 10 percent of the monies you earn from your Web site are donated to hearing research. You are such an energetic, generous, and inspirational person. I really am proud to know you. I hope my colleagues and friends from the American Academy of Audiology will take a look at your site and maybe share the site with their patients and children and friends.
Hayleigh: Okay, that would be cool. Thanks very much. It was wonderful meeting you too! Here's my mom.
Academy: Hi, Rachel.
Rachel: Hi, Doug.
Academy: Of course, you know she is amazing.
Rachel: Yes, she is a blessing.
Academy: And I wonder if you'd mind sharing a little of her birth and medical history, because she has overcome so many very significant issues.
Rachel:

Yes, she really has. Well, the quick story is before she was born, the doctors noticed on the sonogram at 16 weeks gestation, she had a congenital diaphragmatic hernia, although Vienna was totally normal. A congenital diaphragmatic hernia allowed her organs to be terrifically displaced, such that her stomach was in her chest cavity, along with her intestines and bowels, displacing her heart. The displaced organs inhibited development of the lungs.

There weren't very many good options. They gave us choices that included termination of one baby, a new (at that time) in-utero surgery and watch and wait. So my husband and I thought it through and decided to set-up a prayer group and let nature take its course. We had tons of support online and in-person and by the time the girls were born, we had thousands of people supporting us through the prayer group and it was really wonderful and quite amazing.

Hayleigh and Vienna were born at just over 37 weeks and they were born within the same minute. Vienna was normal and healthy and screaming loud, and Hayleigh was silent and grey. The doctors immediately hooked her up to the Extra Corporeal Membrane Oxygenation (ECMO) machine in the intensive care unit, which had rarely been used on infants at that time.

So things were very intense and she stayed in the ICU for two and a half months and was quarantined for the first two years of her life. We only realized she had hearing loss when she was about 18 months. I had taken the girls to the park and I noticed Hayleigh wasn't attending to the loud airplane sounds just above us. Vienna noticed the noise right away. So that's when I decided we had to figure out what was going on with her hearing.

Academy: Of course, 11 years ago, most children were not screened for hearing loss at birth, although some 95 to 98 percent of the children born in the United States are screened now. And of course, with her medical issues at the moment of birth, hearing screening would have been a rather low priority. I would suspect that given the extensive medical and surgical treatments she's been through, there's just no way to know what actually caused her hearing loss.
Rachel:

Exactly. That's what her doctors have told us, too. And so she's been wearing hearing aids pretty much her entire life, and that's brought us additional challenges and opportunities, too. But as you can imagine, when we first heard the hearing loss diagnosis, my husband and I, and other people close to Hayleigh, had concerns about how other children might look at her or tease her for wearing hearing aids. This led to some discussions where we talked about hiding and camouflaging her hearing aids, so she would fit in, and not be looked at negatively—and the rest is history.

Hayleigh decided her hearing aids were destined to become pieces of art, and perhaps an artistic statement. She wanted to be proud of her hearing aids and ultimately turned her personal ambition into a mission statement for her business. She wants all hearing impaired people to feel good about everything that makes them into the fantastic individuals that they are.

Academy: Wow. Rachel, it's truly a pleasure chatting with you. And I know we're over the time limit and you have lots of other things to attend to….Congratulations on being among the very best moms on the planet, and I wish you and Hayleigh and your family all the very best.
Rachel: Thank you so much, Doug.

Douglas L. Beck, AuD, Board Certified in Audiology, is the Web content editor for the American Academy of Audiology.

 

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