One Family’s Journey
Connie’s Path to Communication
While downtown Vancouver rioted after the Canucks lost the Stanley Cup final in 2011, our own world came tumbling down around us: we had just received news beyond doubt that our six week old baby, Connie, was deaf.
Just two weeks after her birth, Connie didn’t pass the newborn hearing screening. Having not given a second thought to the appointment, we were shell-shocked. Although a lot of babies don’t pass the screening test only to have their normal hearing confirmed through the full-blown diagnostic tests, we were terrified at the prospect of Connie not being able to hear properly. Neither of us knew the first thing about hearing loss, and we had no idea what it might mean for Connie and for our family.
We had to wait four excruciating weeks for the diagnostic tests. And even when the day arrived, the wait was not over. Testing a baby’s hearing is no easy feat: babies need to be in a deep sleep so that the equipment can accurately read the brain’s response to the sound stimuli. It took three painfully long appointments before we were finally told that Connie had a profound hearing loss in both ears.
What does it mean to be deaf? Why are we not aware of deaf people in our community? Are they so poorly integrated that we don’t cross paths? We had no clue. Our saving grace that day was the response the audiologist gave; she told us that she herself had a severe hearing loss. We were gobsmacked. We had been talking with her all day and never would have realized that she had any trouble hearing! That was the beginning of our steep learning curve; studying the A to Z of hearing loss in our modern world, where technological innovation and early intervention services are opening the door to more communication choices.
We learnt over the next few weeks that it would take time to figure out Connie’s path to communication. She would initially be fitted with hearing aids. We discovered the world of sign language. Because Connie's hearing loss was profound, we were also told that she might be able to get a cochlear implant--but not until she was one year old. We were astounded to learn about these “bionic ears” that help deaf people to hear and be part of the hearing world that we took for granted.
We registered Connie with the CI program, and got on with the process of fitting Connie with hearing aids. But since she was still a babe in arms, it would take many months to know what sounds she could access. The one thing we came to realize with certainty, however, was that Connie could benefit from sign language, and we began learning and using sign supported speech. We talked to many professionals and to other parents of deaf and hard of hearing children. This solidified our decision: total communication was the natural choice for us.
What followed were seemingly endless appointments and home visits. The hearing aid and CI audiologist, surgeon, teacher of the deaf, sign instructor; these are some of the exceptional people who have worked tirelessly (and continue to do so) to give Connie the best start possible. Connie’s first year was extremely hectic but, ironically, the journey often felt slow while we waited to see what Connie could (or couldn’t) hear with her hearing aids, and if she could receive cochlear implants.
Work, Play, Wait and See
Let’s talk hearing aids. A parent needs to have eyes on the back of the head and three extra pairs of hands to keep hearing aids on a three-month-old. Despite learning all sorts of ways to focus Connie's attention on the sounds around her, it slowly became apparent that even with hearing aids, she wasn't able to hear a whole lot: a 90 decibel shaker held close to her ear-- yes, she should hear that. Speech-- no. This was further confirmed by a series of behavioural tests as she got closer to her first birthday.
Next came the CT and MRI scans necessary to assess her suitability for a cochlear implant. They would tell us if the internal anatomy of her ears and hearing nerves could “accept” implants. Although rare, there are instances where a cochlear implant just won’t work anatomically. This was the moment that we had been holding our breath for all year – which path would Connie travel along; would she be able to enter the hearing world, where speech and sign would be equally accessible to her, or would her hearing remain very restricted, and our family would commit to a path of predominantly using sign language?
Our hesitations about raising a deaf child using predominantly ASL did not lie with Connie’s capabilities; we knew by now the only thing Connie could not do was hear. Our fears lay with our own limitations; sure, we would do our best to become proficient in ASL as quickly as possible but how would this gap in our fluency affect the intimacy of our relationships with Connie? And how effectively would our extended family (who, being British, have opportunities for exposure to BSL, but not ASL) and the broader community communicate with her?
We’re delighted to say that Connie received what to us was the best birthday present possible. Just two days after her first birthday, Connie got two cochlear implants. Unfortunately, the magic fairy was unable to deliver the implants during the night, and so Connie had to undergo a 7½ hour surgery-- the longest day of our lives.
Sequential or Simultaneous?
She's a groundbreaker, being only the second child to receive two implants at once in this province, where the team recently changed their policy based on the cumulating evidence that supports the benefits of simultaneous implants in some circumstances. We took the decision of choosing between having two implants done at once (simultaneous) or one after the other (sequential) seriously although Connie’s case seemed quite clear to us.
We have the good fortune to know some pediatric anesthetists. Indepth discussions with them and the cochlear implant surgeon about the safety of the procedure left us in no doubt that the longer, single surgery was our preferred route for Connie. It’s our understanding that there is no consequential risk to the longer surgery in an otherwise healthy child; anesthetics are incredibly safe these days, being administered in a sophisticated, highly controlled manner. To us, a plus side to Connie getting both implants at the same time was that she only had to ‘go under’ and ‘come out’ of the anesthetic once. A downside was that there were two incisions to deal with at the same time. However, this was balanced with only having to stay in hospital once - a more manageable prospect as well as probably reducing the risk of infection. And since Connie gained hardly any hearing from her hearing aids, there was little to be lost from a hearing point of view.
We're through that tough time now though; Connie recently turned two. Cochlear implants are not the overnight cure that some YouTube clips would seem to have us believe. The amount of sound she had access to gradually increased over many months, while Connie received habilitation therapy to teach her how to listen, how to interpret the sounds she hears, and how to talk.
There were times during Connie’s first year when her lack of response to sound despite our sustained efforts with the hearing aids was discouraging, even painful. However, the bag of tricks we gained has stood us in good stead. Connie got off to a flying start with her cochlear implants; she was quick to accept wearing them, as well as to absorb the world of sound and join in with her own voice. Connie has gone from barely vocalizing to stringing together four or five word sentences. That Connie has the speech of a typical two-year old despite having the hearing age of a one-year old continues to amaze us. Her speech is so fluent that at times we have to stop and remind ourselves of what she has achieved with the help of her dedicated support team.
As I'm sure you can tell, we are thrilled that Connie has this opportunity to hear. But we also stand tall in saying that our daughter is beautiful, and part of this beauty is her deafness. As Connie reached the developmental stage where language emerges, the doors to sign and oral language opened simultaneously; around the time of Connie’s cochlear implant surgery, she started to reciprocate our efforts to use sign supported speech. As hopelessly unilingual parents, we are proud of Connie’s bilingualism. That facility with two languages helps her when she’s not wearing her implants, and it compliments and emphasizes her spoken language. As she grows, we hope it will help her identify with her deaf and hard-of-hearing peers, and boost her self esteem.
This path less travelled has been, and will doubtlessly continue to be, a bumpy one. It has also been wildly enriching. Our experience with Connie brings clarity to our lives. We have a clearer sense of our values and priorities; we sweat the small stuff less and realize how very lucky we are.