Alex DeMolina: Falling on Deaf Ears
Alex DeMolina didn’t get to watch as her profoundly deaf daughter, Kiersta, heard sound for the first time through her cochlear implant. DeMolina was holding the toddler on her lap as the doctor turned on the volume.
Luckily, Kiersta’s dad, Brian Archer, caught it all on video. They have watched that moment of delight and discovery together again and again. “It’s very emotional for us,” says DeMolina, of Tampa.
The moment captures the promise of the future for the feisty little girl who has been deaf since birth. The cochlear implant will most likely change the trajectory of Kiersta’s life.
But those first few seconds when Kiersta’s face lights up also represent a victory for her mom, whose dogged determination helped her navigate the complex system of ever-shrinking services to assist her daughter.
“We’re finding our path, searching for our way on this journey,” DeMolina says.
That journey began almost as soon as Kiersta was born on Feb. 10, 2010 and a preliminary hearing screening, which is required for all newborns by the state of Florida, was administered. Kiersta failed, and her parents were told to follow up with their pediatrician.
The pediatrician didn’t take particular note of the test, but DeMolina refused to shrug off the results. She demanded further evaluation. The bad news came a month later: Kiersta had profound hearing loss in both ears. The good news was that at least now they knew.
Despite the screenings done in hospitals, research has shown that children can often go years without anyone diagnosing their hearing impairment, which affects speech and learning during the most critical time of child development. Parents fail to follow up. Doctors fail to take note. Somehow, children slip through the cracks in the system.
“It was definitely something that could have been pushed onto the back burner,” DeMolina says. “All we knew is that we were supposed to follow up. But if you don’t know who to call as a parent, you might give up.”
The diagnosis only brought more questions, however. “All of a sudden reality set in,” DeMolina says. “She has a hearing loss — what do we do? Where do we go?
“I could see how a lot of good parents might feel lost — the denial part of it, or the not really knowing what to do,” DeMolina says. “For us, it was a couple of months of ‘Where do we get services? Who can help us?’”
DeMolina found help and guidance through a number of public and non-profit programs, including the Early Hearing Detection and Intervention Program, Florida’s Early Steps program, the Bolesta Center at University of South Florida, and the Barton G. Kids Hear Now Foundation at the University of Miami.
But she is dismayed that many programs that assist children, already underfunded, constantly must fight to stave off cuts by Florida legislators. Those programs should be expanded, not reduced, she says.
“Instead of going forward it’s going backwards,” she says. “They need to stop and say to themselves, “Look at what we’re doing.’ No one is really seeing the kids and the families. They just see numbers on a piece of paper. They don’t see how their cuts affect people.”
She is amazed, for example, that parents have to fight to get hearing aids for children who have moderate hearing loss. “If you just start cutting all the things that help children, how are they ever going to learn to be productive citizens?
“I really rely on these programs and these providers to assist me as much as possible,” DeMolina says. “Unless you’re a professional in the system, you really don’t understand. You don’t know what to do.”
DeMolina worries about all the children in Florida whose parents either can’t or don’t know how to access services. Caring for Kiersta — all the appointments with doctors, therapists, speech pathologists, audiologists — is a full-time job, even now that she has an idea of where to turn.
“Luckily, we live in a city and have these things available to us,” DeMolina says. “What happens if you live in a rural community where they might not have services? What do you do if you don’t have a car to go to appointments? What if you don’t have access to the Internet to do research? Who do you turn to?”
The Children’s Movement of Florida has advocated for a $20 million expansion of the Early Steps program and an easily accessible system that would offer parents screening tools and referral resources via online, telephone and community portals. But getting state officials to shift money to support children’s issues is a continuing challenge.
DeMolina is very much aware of how much her family relies on public support for programs that can help her daughter.
“We’re on pins and needles, wondering what will happen next,” DeMolina says. “I wouldn’t have been able to provide these things for her. I have no clue — no clue! — how we would have been able to give her listening and spoken language.”
Although Kiersta now has a cochlear implant, her journey has just begun. The implant is a complex electronic device that is surgically fitted to bypass damaged portions of the ear and directly stimulate the auditory nerve. It does not restore normal hearing. However, it can give a deaf person a useful representation of sounds in the environment and help understanding speech.
Kiersta faces years of speech and hearing therapy to help her catch up — and keep up — with her peers. And that’s not all. So far, she only has an implant in only one ear. Medicaid won’t pay for the second ear.
“They don’t feel it’s medically necessary,” DeMolina says. “They don’t see why a child should have two ears.”