How we decided to fit our baby with a cochlear implant
When my baby boy was born, I looked at him nestled in my arms through teary, tired eyes and knew he was worth the pain. But when he failed his newborn hearing screening numerous times our world really was turned upside down.
Being profoundly deaf, we quickly found out that Harry couldn’t hear a thing. It broke my heart thinking about the months spent talking to my bump and realizing that he hadn’t heard a word. The little competence I had gained during those early weeks as a first-time mum had been completely diminished. I was suddenly thrown into the unknown, where nobody I knew had ever been.
Once we had gotten over the shock we started to realise that just because Harry was deaf it didn’t mean that he wasn’t perfect. The main thing was that he was happy and healthy.
Being hearing parents with a deaf child was really difficult to start with. Of course, we were brought up to communicate orally, with speech, and we didn’t know any other way. But sign language lessons were a blessing and we picked up the basics really quite quickly. I started to gain some hope that if my boy couldn’t ever hear me we could at least talk to each other through our hands and bodies. It could feel quite special like our own secret language!
As Harry grew older I started to see the differences between him and his little buddies. I couldn’t help but feel that he really was missing out on some of the beautiful things there are to hear in the world.
When he was six-months-old, doctors confirmed that his hearing aids were doing nothing for him. We then faced a decision between manual and oral communication, between “Deafness” and “Hearing,” with the option of getting him fitted with cochlear implants.
For many parents, this decision on whether to get your child fitted with cochlear implants is extremely difficult to make. Some don’t even see this surgery as an option for them at all. But we really felt quite strongly that we wanted to bring Harry up in a hearing world, to have no boundaries and most importantly to be able to speak to us. We wanted to give him the chance to be able to communicate with the larger hearing population.
The risks of cochlear implant surgery are minimal, but they are still there, and this was something we had to take in and really consider. Facial paralysis is very rare but it is a possible side effect due to an important nerve being so close to the surgery site. Meningitis was also a risk, but again is rare, and Harry was given an extra vaccine to prevent it. The cochlear implant operation itself is not to be taken lightly. I have written a lot more about it here, but you need to be 100% confident in your decision to be able to send your child down to that operating room.
When making our decision, I did a lot of online research by joining forums for parents in the same situation. It brought me great sadness to read that there is so much hate surrounding parents who decide to give their children a cochlear implant. I read suggestions that we don’t think our children are good enough and that we shouldn’t want to change the way they were born. In one thread I read from a deaf adult who said that a parent’s decision to give a child surgical access to sound was offensive to her.
I had to remind myself though, that it really is all opinions though just like politics, cosmetic surgery, breastfeeding, etc. I tried to read both sides of the argument with this in mind, as there is no right or wrong decision.
I certainly didn’t think that Harry needed to be “fixed.” In fact, I still refer to him as a “deaf child,” because – of course – he is and always will be deaf, he just has aids to help him hear. I did, however, want him to experience the world in the same way that his dad and I do, if that was at all possible. I didn’t want Harry to grow up and ask us why we never chose to give him hearing if we had the opportunity. If he decides one day that he actually doesn’t want to hear he can simply take away the cochlear implant hardware and chose never to wear his cochlear implant again.
I also try not to refer to Harry as having a “hearing loss” or being “hearing impaired,” as he never lost anything. He was born deaf and natural hearing was something he never had. I know this is something some deaf people feel quite passionate about and I try to be respectful of that.
I, of course, standby the decision that we made back in 2014 to have Harry’s “magic ears” implanted. His Advanced Bionics cochlear implants are honestly an absolute miracle for him and it has changed all of our lives immensely. I don’t think that because a child is deaf they should have a cochlear implant. I think the decision should be taken seriously and all avenues should be explored. I hope this post has helped any other parents that are in the position that we once were.