The Early Hearing Detection & Intervention (EHDI) 10^th Annual Conference was held in Atlanta, GA in February 2011. As the mother of three late-identified children with hearing loss, I had the honor of attending the conference representing the parents of Idaho's children who are deaf or hard of hearing.

My children (six, five and two years old) all passed their newborn hearing screens. I was initially hesitant about attending the conference simply because my only knowledge of EHDI was that they provided the basic infrastructure and support to hospitals for newborn screenings. Since we were past that phase it was unclear to me what my family could bring to the table for EHDI and the State of Idaho. Our newborn screenings happened to be the best and most unquestionable experiences we had in our hearing loss journeys. 

Prior to attending the conference, I had the opportunity to meet and receive input from other Idaho parents who had devastating experiences. I realized that parents of children with hearing loss not only have a special need in common, they have a diagnosis story as well. A story, no matter how different from others, leaves every parent with varying degrees of emotions followed by an immediate question of "what next?" 

My Journey

Our first child, Audrey, was 18 months old when we originally discovered a possible problem with her hearing. We didn't have reason to suspect hearing loss except for the fact that she wasn't attempting to speak with words. She passed her newborn screen, our family didn't present with a history of hearing loss and she was very loud and vocal--something I didn't expect from a profoundly deaf child. However, her language development seemed delayed compared to her peers.  

It took approximately four months, two sedated ABR's, tube surgery and countless OAE and behavioral tests before establishing a final diagnosis of bilateral profound sensorineural hearing loss. I'm not sure we went through the typical grieving process some hearing parents face when receiving a diagnosis such as this. We had four months to research, absorb the possibilities of raising a deaf child and run a thousand different 'what if' scenarios all with the ever so slight chance that everything would be normal. We definitely had our moments, but those moments were easier to get through without actually having to face facts. Not to mention, our very loud, happy, bouncy, confident little girl didn't seem at all affected or saddened by the possibility of not being able to hear. Her life wasn't about to change--ours was. 

Research, information overload and networking helped prepare us for the next phase of our journey. Once the diagnosis was confirmed, we hit the ground running and Audrey received simultaneous bilateral cochlear implants one month after her second birthday. As hearing parents, we naturally wanted to expose her to an oral environment as best we could. At the same time, we knew cochlear implants weren't a cure for deafness and they also didn't always provide complete access to auditory information. 

Focusing on just one form of communication proved to be difficult for our family. Auditory-oral was our goal but eliminating visual signs and cues was not practical for Audrey's style of learning. Her receptive language was exploding with signs and she was gaining access to spoken language and sound through Cued Speech along with the use of her cochlear implants. 

Little did we know at the time, all three forms of communication would ultimately benefit Audrey's two little brothers as well. Our second child, Evan, passed all of his hearing tests in his first year. He was developing normally and seemed to be above his peers in terms of speech and language at the age of two. We greatly appreciated his passive learning skills. He didn't have to be taught what water sounded like when it came out of a facet. He knew that "night, night" also meant "time for bed" without me having to tell him over and over again. The small things that parents of hearing children never have to think about overcame me with relief.  

As the due date of our third little one approached, Evan's speech seemed to drop off a bit. High frequency sounds such as /s/ and /f/ were not pronounced as they should have been. It wasn't incredibly noticeable and I would have never given it a second thought had it not been for the prior two years of speech therapy with Audrey. Still, my husband and I were quick to use the new baby as an excuse. Evan was compensating for the fact that he was going to have to share the title of little brother with someone else. 

We left it at that and rejoiced once again with a passing newborn screen for our third baby, Ian. If it wasn't for the persistence of our pediatrician to follow up with more hearing tests, we probably wouldn't have been diligent with Ian. Even though we didn't have answers or reasons for Audrey's hearing loss, it didn't seem possible for him. Nonetheless, at the age of four months, his ABR showed bilateral mild loss. 

I'm not sure who I felt sorrier for at the time ... myself, Ian or our audiologist. For whatever reason, it hit us all very hard and it was then I finally felt the grief that escaped me with Audrey; a ton of bricks I never saw coming. The emotions that hammered me at an unusually high rate of speed were not due to the realism of the diagnosis. Audrey's progress was beyond our expectations and we knew Ian wouldn't skip a beat. At the same time, I was selfishly overwhelmed with motherhood. How was I going to keep it all together? How was I going to fit biweekly speech therapy sessions in along with all the other appointments we were facing? Even though his loss was mild, we assumed he would follow in the footsteps of his older sister and how could I worry through another six hour cochlear implant surgery? Luckily for Ian, we already had a path to follow. Unfortunately for me, I wasn't thrilled about having to go down it again. 

Just as we suspected, we watched Ian gradually go from mild to eventual profound loss over the following eight months. He received simultaneous bilateral implants one week before his first birthday. Also during that time, at the age of three and a half, Evan was diagnosed with mild to severely moderate progressive, high frequency, fluctuating loss and was fitted with hearing aids. Evan's loss continues to perplex everyone and we're not sure why he is so different from his siblings. He often wonders too and frequently asks when he's going to receive "earplants". CT scans were all normal and our family tested negative for Connexin 26. We are currently waiting to do the OtoSCOPE genetic test being developed at the University of Iowa.   

Aside from trying to keep track of thousands of dollars' worth of equipment on my children's heads, we seem to be on the flat part of the roller coaster for now. I'm thankful to be blessed with three exceptional kids who continue to amaze and exhaust me. We're lucky to be surrounded by service providers who my children actually consider family; we see most of them A LOT! I was first introduced to pediatric hearing loss five short years ago, and it's quickly defined who I am as a parent as well as a community member. It's probably too soon to say, but attending the EHDI conference just might be a life changer for me.  

For the Next Family 

At the conference, I learned there are a small handful of professionals, referred to as "Giants" in the EHDI world, who have dedicated their lives to making sure parents receive diagnoses at the time of birth rather than three, four or five years later. Even though our news did in fact come later, at least we had a baseline because of the newborn screenings. I am grateful beyond words for the persistent arm-twisting of those "Giants" and continued efforts of others who follow in their footsteps. 

Nothing can eliminate the harsh realities or sense of relief of what a parent feels at the time of diagnosis. However, "what next" lasts much longer than that initial emotional impact and has the greatest influence on the future of our children. I don't think a lot of parents know or understand how much of a role EHDI currently plays (or CAN play) in helping with those "what next" questions. The biggest surprise to me was the number of people out there committed to ensuring the success of our children with hearing loss. It was exciting to see the changes and progress that have been made over the last ten, twenty, and fifty years in terms of identifying and providing early intervention services to deaf/hh infants and children. As much as it doesn't feel like it sometimes, our children are very lucky! There is much more opportunity for them to meet their full academic potential than ever before. 

We, as parents, are also lucky because we can take advantage of the hard work and dedication that has taken place before us; a movement that continues to strive for excellence daily. Again, as much as it doesn't feel like it, we are truly not alone. EHDI's mission is to set standards, establish goals to shape the future, and to help guide the "what next" each parent will experience. Parental input and participation are not only invaluable, but are necessary components to this process.  

For instance, now that (most) families receive the diagnosis within an appropriate time period, how can the information be delivered in an effective manner without traumatizing the family before leaving the hospital? How can the nursing staff or pertinent service providers relay the extreme relevance of follow-up testing on babies with high risk factors? How can parents be told a mild hearing loss doesn't necessarily mean it will have a "mild" impact on their child's academic future? Or, just because a child failed a hearing test does NOT mean the child (or the parents) is a failure. Parents who have experienced these situations are the keys in answering the questions. 

Howard Rosenblum, the CEO of the National Association for the Deaf (NAD), eloquently suggested in his EHDI keynote that expectations should not be lowered for children with hearing loss. Success has no boundaries if limits are not placed. Instill dreams, and confidence will follow. I would also urge parents to not lower expectations for themselves. Step out of your comfort zone and get involved. Whether it's as simple as joining a local/national association or as complex as organizing a parent get-together and/or attending an EHDI conference; networking and educating yourself will go a long way in shaping expectations and outcomes for your child. 

As I learned at the conference, EHDI does not end with identification. EHDI is a stepping-stone in developing partnerships and building long lasting family support, which ultimately will lead to the success of our children.