HH/Beck: Hi Ms. Miller. Thanks for speaking with me today.
Miller: Hi. Dr. Beck. It's nice to be here.
HH/Beck: You have two beautiful and extraordinary daughters, and I was hoping you could tell us a little about them?
Miller: Sure. Veronica is my older daughter, she is 9 years old. We discovered her hearing loss when she was about 16 months old. We asked the pediatrician about it because she wasn't responding to her name, and we were concerned. The pediatrician said don't worry and told us to come back later. But we really thought something was wrong, we just knew, and so went on our own to see an audiologist. When we learned she was profoundly hearing impaired in both ears - we were blown away! We had her fit with an auditory trainer right away. Most hearing aids just weren't strong enough for her so we wanted to get a cochlear implant right away, but at that time, we had to wait until she was two years old. Now they can implant children at 12 months. She was implanted about a week after her second birthday at Manhattan, Eye and Ear and she's had her cochlear implant for 7 years.
HH/Beck: Which cochlear implant system does she use?
Miller: She has the Clarion cochlear implant by Advanced Bionics. In fact she was part of their early clinical trials and was one of the first children they implanted. She has their BTE (behind the ear) model now and really loves it.
HH/Beck: Please tell me about her educational setting? How is she doing at school?
Miller: She is mainstreamed and is currently in the 4th grade. She's doing really well and she's learning along with all of the normally hearing children. She uses an FM system at school and that really has worked out well for her. The teacher wears a little microphone and her voice is transmitted directly to Veronica's cochlear implant, it's been really good.
HH/Beck: Does she receive any additional support services at school?
Miller: Yes. She receives speech therapy every day at school, and that really is a good thing for her. Her speech is pretty good!
HH/Beck: Yes, it is. She spoke to me earlier today and her voice was very nice, and I'm sure it'll get better still. Please tell me about Samantha.
Miller: Samantha is my younger daughter. We had her hearing tested when she was one day old. The obstetrician told us don't worry. And of course, we had heard that before! So because I knew I had a 1 in 4 chance of having another deaf baby, I decided to find another obstetrician! We also found out that the hospital he was affiliated with didn't have newborn hearing screenings! Even just a few years ago, it wasn't yet mandatory in New York, so we needed to go somewhere else for our own sanity! So making a long story short, we got a new obstetrician and a new hospital. So when she was tested, we found out right away that she had hearing loss.
HH/Beck: Was the cause of their hearing loss determined?
Miller: Yes. Both girls have hearing loss due to Connexin 26. There's no deafness on either side of our family. It's a non-syndromic hearing loss based on a genetic mutation. I know most people have never heard of it, but it is a common cause of hearing loss.
HH/Beck: So Samantha was fit with hearing aids much earlier than her sister?
Miller: Yes, she was fitted for ear molds when she was about two weeks old, and then fitted with hearing aids by the time she was 4 weeks old. She also started speech therapy right away through early intervention at our house, and now she attends a mainstream nursery school, and she receives speech therapy every day.
HH/Beck: And although they are both beautiful, only one of them could be the poster child for the Starkey Hearing Foundation, and I guess that's Samantha?
Miller: Yes that's right. Samantha gets that honor, and in fact, Bill Austin, from Starkey, has been taking care of her hearing aids, and that has been simply fantastic. I am so grateful for all of his work with children. He really is amazing.
HH/Beck: And Veronica has had some time in the spotlight too?
Miller: Yes. Veronica has worked with the Deafness Research Foundation, and she was on a poster for the DRF with a ballerina from New York, so that was nice too.
HH/Beck: Which one had the opportunity to address Congress?
Miller: Veronica got to speak to Congress on Capitol Hill. She said that every baby in America should have their hearing tested at birth!
HH/Beck: That must've been incredibly exciting! So they're both famous and politically involved, and advocating for better hearing before they're out of elementary school - very impressive, you should really be proud of them!
Miller: Of course, I really am, but it's nice of you to say!
HH/Beck: And I suppose that politically active children acquire some of these skills at home?
Miller: Yes, I am the president of Hear US Long Island, which is an affiliate of the DRF. It's a volunteer group, and it's free, no fees at all. We meet once a month, and we have speakers like implant surgeons, child psychologists, audiologists, deaf educators and many others. I encourage everyone who needs information or support services to visit with us.
HH/Beck: What are your hopes for your kids with regards to their hearing, in say 5 years?
Miller: Well, I am really looking forward to the totally implantable cochlear implant for Veronica. Although the device we have now is absolutely a miracle, if Veronica could have the totally implantable device, she could hear all the time like while swimming, showering and sleeping, it would just be amazing. You know, if there's an emergency in the middle of the night, sirens and other auditory alarms won't wake deaf people that have taken off their hearing aids or their cochlear implants for sleep. So, I think that's the ultimate goal, and something I'd be happy about.
HH/Beck: And for Samantha?
Miller: She wears hearing aids at this point. One ear is profoundly hearing impaired and the other is moderately hearing impaired. If and when she needs a cochlear implant, the totally implantable implant would be great.
HH/Beck: OK, well, I know you've got two little girls to keep your eyes on, so I'll let you run. But for people who may want to find out more about Hear US Long Island, how can they get in touch with you?
Miller: They can go to the DRF website at www.DRF.org or e-mail me at HearUSLongIsland@aol.com.
HH/Beck: Thanks so much for your time Laura.
Miller: Thanks to you too for inviting us to tell our story!
CLICK HERE to visit the Starkey website.
CLICK HERE to visit the Advanced Bionics website.
