A little background

I decided to write this blog after finding out our daughter Isabel was born profoundly deaf.  When we found out I immediately went home and was on the internet researching all of our options and I came across several blogs from other parents of babies in the same situation as we were.  These blogs were incredibly helpful in making me feel like I was not alone (I am talking word for word the exact experience of emotions that we were feeling!!) and reassurance that we would in fact get through this.  I have chosen to share our story for two reasons....firstly I hope that our experience may help other parents that feel like the rug has been pulled out from under them and help reassure them that there is a light at the end of the tunnel and secondly so that Isabel one day is able to look back and read about her journey from silence to the hearing world.


And so a little background.....

Isabel was born in Canberra, Australia on April 1st of this year.  After a perfect, healthy pregnancy and a somewhat long labour (18hrs!) she arrived weighing in at a healthy 3.6kg and passed all her initial tests and checks with flying colours.  I was told while in hospital that Issy would have to undergo a compulsory newborn hearing screening before we were discharged to go home, so on our final day the screener came to our room to do the test.  Isabel failed this test but was a little agitated at the time so the results were inconclusive and they asked us to come back, which we did 2 days later.

Isabel Louise Cairns arrives

Isabel again failed this second screening.  At the time the screener told us she may have a fluid build up in her ears and to take her home for a few weeks and feed her to see if it will clear and then come back in and try again.  We did.  Isabel failed the test again.  It was at this point we knew something wasn’t right….I managed to hold it together in the hospital but as soon as I walked outside with my husband, I burst into tears.

Isabel failed a third screening a few days later and we were referred to the Canberra Hospital’s pediatric audiologist unit for more specified testing. This testing took a couple of hours and was conducted whilst Isabel was asleep, once she woke up my husband Chris and I went back in to get the results.  It was at this time we were told Isabel had a severe to profound hearing loss. Sensing we were not exactly sure what this meant, the audiologist said ‘Isabel is deaf’.  I couldn’t speak from that point, the word DEAF terrified me and I immediately felt as though a life sentence had been passed down. I just held Issy in my arms and cried and cried while Chris spoke to the audiologist and they explained what would happened next.

We were told the positive thing to come from all of this is that because we caught this so early and because Isabel had such a severe loss, there was a very good chance she may be a candidate for cochlear implants.  We were familiar with Cochlear as Chris’ father, Lance had been the recipient of a Cochlear implant just 12 months prior, at the age of 60 and we had seen how big a difference it had made to his life. So although this was by far the scariest thing that had ever happened to us, we knew there may be a light at the end of the tunnel.

The audiologists at Canberra hospital were fantastic. Not only did they talk to us about our options, they called an Ear, Nose and Throat specialist and got us in that day.  They also made an appointment for us to have Isabel’s hearing aid moulds fitted the next day.  It was on the back of this care and efficiency that we decided to relocate from Dubai back to Canberra to ensure Isabel would have consistency of care and people around her that would be there to see her through to school and beyond.  At the hospital that day we were also given the details of a range of different deaf support groups and organizations for deaf children and talked to about options like signing and deaf schools etc.  For my husband and I this was out of the question right from the start. If Isabel was able to have cochlear implant surgery we were going to make sure that she would learn to listen and speak like any other hearing child.

We contacted the Shepherd Centre on the back of this as we believed in their philosophy of teaching children to listen and speak and getting them ready for mainstream school.  I may have seemed a little nuts knocking on their door when Isabel was only 4 weeks old, but it was so important for us to be proactive and we too wanted to educate ourselves on the process ahead.  It was during our visits to the Shepherd Centre that we have been able to meet with families of children who through early intervention have received cochlear implants.  Meeting these children and seeing how well they are doing, many who are ahead of their hearing peers, reaffirmed for us that our decision for Isabel to get bilateral cochlear implants was the right one.

Isabel & her Papa

Our most recent hurdle occurred last Friday when Isabel underwent an MRI and CT scan to assess whether she has all the internal structural components required for Cochlear implant surgery.  It was a long day at two different hospitals, but at about 5pm on Friday evening our surgeon, Dr Chang, after looking at Isabel’s scans, came and told us that she had two perfect cochlea’s and two auditory nerves in place and that we could go ahead and plan for surgery.  Chris and I again couldn’t hold back the tears, this time of joy.

Isabel’s surgery is this Friday and we are both scared and excited for that day.  Scared because no one ever wants their baby to have to undergo surgery at 5 months of age, or any time for that matter(!), but excited because we know that once Isabel has her Cochlear implants we can begin working towards her future….a future that includes listening to music, speaking to her friends on the phone, playing sports and whatever else she wants to do.

Our girl

We don’t see any limitations for Isabel and we are so glad we underwent the newborn screening and caught this so early.  We are also so thankful for the Cochlear technology and the amazing staff at organizations like the Shepherd Centre that really are the link between the technology and ensuring it is used to its full potential.  I know there has been some debate about the value of technology and the impact it has on society. In Isabel’s instance the impact is life changing and our little girl now has the chance to be whomever or whatever she wants to be.