A PARENT’S PERSPECTIVE

11/6/2020

Andi P. Hill
Parent, Mentor, Advocate
ACI Alliance Alabama State Champion

I happened to first hear the words “cochlear implant” watching Caitlyn Parton and her parents appear on 60 Minutes in 1992. I was raised on the northern shore of Alabama, in the diverse, technologically-rich environment of the Rocket City, 70 miles from Helen Keller’s birthplace. My only exposures to deafness prior to my own children’s births were from school field trips to Ivy Green and Caitlyn’s appearance on 60 Minutes. Like the majority of those outside the community of people affected by hearing loss, I never appreciated the tremendous challenges associated with language acquisition and communication access for people who are deaf and hard of hearing. Just a little over a year from the day the Parton Family appeared on 60 Minutes, “Caitlyn’s Story” as one of our nation’s first pediatric cochlear implant users would be far more than memorable or fascinating—it would be highly personal.

Our oldest daughter, Jessica, was born in 1993—well before Newborn Hearing Screening was available. By the time she was 4 months old, I suspected something was wrong with her hearing. The general consensus of most family members and professionals I summoned the courage to tell was that I was an over-paranoid first-time mother. When Jessica was 8 months old, I told our pediatrician “either she is deaf or I am crazy and one of the two of us needs treatment!” He referred Jessica for diagnostic audiology. At a time when the average age of diagnosis was 30 months, our beautiful 9-month-old daughter was diagnosed with moderate-severe sensorineural hearing loss. I’ll never forget my heart sinking as the audiologist made his pronouncement. I desperately wanted to be wrong and for everyone who thought I was an over-paranoid first time mother to be right.

The ENT we saw at the time Jessica was diagnosed in 1994 told us a “great” outcome for her was to learn American Sign Language (ASL), read at a “4th-5th grade level upon high school graduation, and move away from our family and community to a residential school for the deaf early in elementary school. We were devastated and grieving, and his prognosis left us hopeless. With images of Caitlyn in my mind—dancing and singing, indistinguishable from her hearing peers, I persisted in researching progressive options, none of which were meaningfully present in our state. We decided to take the road less traveled and chose Auditory-Verbal Communication, now known as the Listening and Spoken Language (LSL) communication mode. Jessica began wearing hearing aids and we began weekly therapy with a local speech-language pathologist (SLP) who had some experience using Auditory Verbal Therapy (AVT) communication with young children with hearing loss. I implemented everything our SLP told us to do at home, and we were very committed to the process.

Given the level of Jessica’s hearing loss and the absence of any other developmental issues, our therapist expected more rapid progress than we were seeing. She suspected Jessica’s hearing loss was greater than had been diagnosed, something I also felt but had been too overwhelmed to process. She had gone to professional training at the Helen Beebe Speech and Hearing Center. At her urging, we went there to finally get an accurate diagnosis from Dr. Don Goldberg’s extensive testing; Jessica’s hearing loss was severe-profound, not moderate-severe. The first question out of my mouth was “Does that make her a cochlear implant candidate?”

We traveled all the way from Alabama to Pennsylvania to learn that there was a new pediatric cochlear implant program 100 miles from our home, founded by Audie L. Woolley MD. We began therapy with an SLP in his program, Nancy E. Gregg, MS, CCC-SLP, LSLS/Cert AVT, who later became one of Alabama’s first Listening and Spoken Language Specialists, a Cert. AVT. Despite the rigid cochlear implant protocols which were in place at the time, in the fall of 1996, Jessica became Dr. Woolley’s 14th CI patient and Alabama’s first child with severe-profound hearing loss to hear with CI technology. The copious hours of work we had done and continued with our AVT team paid off, and Jessica began to soar.

Before you surmise that Jessica’s hearing loss progressed from moderate-severe to severe-profound, let me stop you. Her audiogram is virtually identical to Jared’s and Julianne’s audiograms, done before they were 9 months old. The chances of two hearing parents having three deaf children is 1.56% but against all reasonable odds, all three of our children are. The differences in their journeys is astonishing and sheds light on why the 2019 Joint Commission for Infant Hearing (JCIH) Guidelines promote a 1-2-3 standard for infants with congenital hearing loss.

Hill Family Hearing Profiles

Across a span of about 12 years and 7 surgeries, our kids did untold hours of work with our LSLS Cert. AVT team and with me, traditional articulation therapy, cochlear implant programming, and dedicated hard work to become fluent, effortless spoken-language communicators who were mainstreamed for all activities, from school to sports. Each of our children broke barriers in pediatric cochlear implantation. As noted earlier, Jessica was the first child with severe-profound SNHL to receive a CI in Alabama. Jared was 18 months old when he got his CI, the youngest recipient in Alabama at the time. When she was 8 months old, Julianne became the youngest implant recipient in our state and one of the youngest in the nation to hear with CI technology. Our kids were among the very first bilateral CI users in Alabama. The lifelong partnership we have with Julibeth Jones AuD crystallized during our kids’ transitions to binaural hearing. Along the way, genetic science advanced; in 2001, we finally knew our kids had GJB2/Connexin 26 deafness, each inheriting a copy of the recessive gene from my husband and me.

Today, the results of our collective labors of love speak for themselves—literally. All are successful cochlear implant users and remarkable human beings by any definition. All graduated from high school with honors, using few accommodations for their deafness. Jessica graduated from college with honors and has her doctorate in physical therapy (DPT). She is Dr. Woolley’s first CI patient to finish a graduate degree. Jessica works as a licensed, board-certified physical therapist in a busy outpatient practice. Recently married, she and her husband Chris have our first grand-dog, a chocolate lab bundle of happiness. Jared is a college graduate who through resolve and persistence amid a global pandemic, started his own business in a highly specialized niche market. Julianne is a college sophomore, majoring in Sports Medicine (PreMed). She is a Presidential Scholar and 1 of 15 students selected for a distinguished service fellowship. With a busy leadership and social calendar, she finished her freshman year with a 4.0 GPA and has her sights set on medical school, in hopes of one day becoming a pediatric CI surgeon or PA. She was thrilled to spend a day observing her amazing implant surgeon, Dr. Audie L. Woolley, in the operating room.

Our family rode a tsunami wave of change with respect to options and improved outcomes for children who are deaf and hard of hearing. As our journey unfolded, I realized an incredible void existed for families who were just learning their infant or child had hearing loss. Over the last 25 years, I have had countless opportunities to step into that void by sharing our family’s experiences—educating, mentoring, and advocating for infants and children who are deaf and hard of hearing and their families.

I co-founded and served as the Executive Director for a not-for-profit which provided information and support to families faced with pediatric hearing loss. I served on the Alabama Newborn Hearing Screening Task Force when screening was implemented in my state. I was an instrumental part of the team which developed a Pediatric Audiology center in my home community in 2010. I have devoted untold hours preparing parents for, and sitting beside them, through IFSP or IEP meetings. In 2017-2019, I co-led opposition to divisive LEAD-K legislation which would have added barriers and burdens to parent choice in my state, one already plagued by restricted choices for working families who want to pursue LSL because of systemic policy and funding inequalities. Serving as a policy specialist, I watched two of my three children eloquently testify before our state’s House Education Policy Committee. I spent hundreds of hours developing strategy, researching and writing materials to provide to legislators, communicating with constituents, and presenting in the many meetings that followed.

Through the work of co-leading my opposition to LEAD-K in my state, I became more deeply connected to ACI Alliance. I had been a professional member for a few years so that as I mentored families, I stayed abreast of current developments affecting people who hear with cochlear implants. Alabama was one of the earliest states targeted by LEAD-K. Contrary to our typical position (last in nearly everything except football), we were one of the first states to develop effective means for opposing divisive and destructive LEAD-K legislation offered in AL. Through email exchanges with Donna Sorkin 3 years ago, I provided some of the first written documents to ACI Alliance for effectively opposing LEAD-K. A few months later, in follow-up with Nichole Westin, I provided documents that outlined strategy and talking points we used in Alabama to oppose LEAD-K. I’ll never forget Nichole’s encouraging response to what I had sent: “This is impressive – very impressive. I’ve been doing this for years and yep – I’d do this.” What came next I count as a great honor: Nichole and Donna asked me to serve as Alabama’s State Champion, and in early 2018, I became the first parent to serve as an ACI Alliance State Champion.

Most parents are not also credentialed as MDs, PhDs, AuDs, SLPs, LSLS Cert. AVTs, or JDs who focus on special education and disability law, but through significant on-the-job-training we must gain functional knowledge in all of those areas to be effective in understanding and meeting our children’s needs. I was a corporate controller before my kids were born, but I’ve become a jack of many trades because the people I love dearly needed me to have expertise in all of those areas. Our experiences, with what amounts to a case study in our own home, have given me important insights that should inform future policies.

I wish I could say the state systems and supports available for families like mine changed in the 7 years between the births of our oldest and youngest daughters. I wish I could say the 20 years since Julianne was born have catalyzed systemic changes so that all infants who are born deaf or hard of hearing can meet the JCIH 1-2-3 EHDI standard. I wish the JCIH Guidelines were codified to ease systemic barriers families face in engaging early so their children can successfully use technologies like cochlear implants with LSL to hear, speak, listen, and thrive. I wish policies and funding allocations which presently make the ASL communication mode easier to access than others in most states had shifted to provide equitable access. I wish national certifying organizations like the American Speech-Language Hearing Association (ASHA) gave the same kind respect and specialty designation for experienced SLPs who are LSLS Cert. AVTs that they give to SLPs who are Board Certified Specialists-Child Language (BCS-CL). I wish specialty certifications for pediatric audiologists and cochlear implant audiologists were more easily recognizable so that parents and consumers could find professionals with the appropriate training and expertise to help them. I wish insurance companies covered hearing aids for all people who are born with or acquire hearing loss before they can speak, read, and write to communicate. I wish insurance companies provided higher reimbursements to pediatric audiologists, cochlear implant audiologists, and SLPs who are LSLS Cert. AVTs. I wish Medicare, Medicaid, and the Veterans’ Administration did more for people with hearing loss of all degrees, and that cochlear implants were recommended by professionals in those agencies far more rapidly and frequently.

The CI and LSL community is not only misunderstood and sometimes neglected by society at large and by our institutions that provide support for children and families at all levels. In so many places in the national conversation, the incredible impact cochlear implants with LSL can make for children is underrepresented, if at all. For meaningful and impactful opportunities for this and the next generation of infants and children with hearing loss, someone has to speak up. If not us, then who? Our stories matter. Our experiences are informative and should have a transformative impact on policymakers. We’ve barely scratched the surface of insuring equal communication access through cochlear implants and other hearing technologies (regardless of age). We are far from appropriate, equitable access to Listening and Spoken Language services for infants and children or aural rehabilitation services for adults. I’ll keep working and speaking up and I have three incredible, amazing people in my family who speak boldly for themselves, for others, and for cochlear implants. Will you?