Isla's Journey
by Aleesha Lloyd

Isla was born in June 2017.  I had a very straight forward pregnancy, and a relatively easy birth with no complications.  Isla and I were discharged from hospital four hours after she was born.  Her new born checks were all completed, except for the new born hearing screening test and I was happy for the test to be carried out a few days later when we were settled back at home. The Midwives visited us at home to check all was well with baby Isla. Isla was quickly discharged from the midwifery team and the health visitors then stepped in, and during their visit they carried out the new born hearing screening test. Isla failed the test at 5 days old.  She then went on to fail one more before the Health Visitor arranged for a more senior member of staff to come and carry out a more detailed test.  The test consisted of her having little pads placed on her forehead and behind her ears, but again, she failed.  At this point, at just 4 weeks old, Isla was referred to our local audiology centre.

As any mother would, I started watching Isla more, focusing on her reactions to sounds and intentionally making noises to get a reaction. Sometimes she reacted, other times she didn’t.  I was watching out for her startle reflex, and seeing whether she stirred to the door slamming, the hoover being on, pots and pans being stacked, the phone ringing. She didn’t respond much, and when she did, I couldn’t be 100% sure it was because she was hearing the sounds.  What I did subconsciously, was prepare myself for the worst, and accepted that Isla was Deaf. I was trying to protect myself from what seemed at the time to be the worst case scenario. 

So, little baby Isla, now 5 weeks old.  Still tiny, but developing beautifully, set off for her first audiology appointment. I took Isla alone, as my husband, Ed, was working. Isla was very good.  For this appointment she had to be asleep, or not moving.  We had what was called an AABR test, with little probes stuck to her tiny head.  I had to hold her completely still, but at least we were going to get this done, once and for all.  About an hour into the test, I knew something was wrong.  Now I’m no expert, and I had never seen any audiology graphs or mappings done before, but I could hear how loud the Audiologist was making the sounds, and Isla wasn’t flinching.  

The test finally came to an end, 2 hours later.  The Audiologist told me she was going to go and gather her findings and then discuss the results with me.  She only leaves for what feels like under 5 minutes, which was a blessing, as I was feeling so anxious. She returns, “So, the test indicates that Isla does have a hearing impairment!”  I wish I could say I was shocked, but I wasn’t. I feel like, deep down, I already knew. I got shown a graph.  The graph was plotted at several points.  The Audiologist explains that people that hear between 0-20dbs (decibels) have normal hearing.  At 20-40dbs would be mild hearing loss, 40-60dbs would be moderate hearing loss, 60-80dbs would be severe hearing loss, and 80+ would be profound.  As a complete beginner, it was very helpful that the graph that I was shown had little pictures on, to represent the noise level.  She began to show me where Islas results were on this graph, and all I saw was a helicopter, a plane, and a dog barking.  Isla has severe hearing loss.  She explained that it couldn't be glue ear, or conducting issues, as she used a device during the test that would eliminate that as an option.  

I was devastated.  My heart was shattered, and I couldn’t understand why or how this had happened.  I quickly gathered myself together as Isla needed to be fitted for her first set of hearing aids.  I couldn’t believe this was happening.  We rearranged for a follow up appointment, to pick up the hearing aids the following week.  I left the centre and headed to my car, to call my husband to tell him the news.  I felt like I had gone to this appointment with a baby who could hear, and left with a baby who couldn’t. Now I have to, not only digest all this information, but I had to somehow announce the news to Islas big sister, Olivia, all of our friends and family.  The thought of telling people about Isla’s hearing loss was the hardest thought ever.  I didn’t want anyone to see her any differently, I didn’t want anyone’s pity, and I definitely didn’t want Isla to be treated any differently.  Isla was the first deaf person that I’d met, and I wondered how I could support her or whether I would ever be able to understand her life fully as a deaf person.

At 12 weeks old, Isla was referred to our Local Auditory Implant centre, and started the process to see whether Isla would be a suitable candidate for Cochlear Implants.  The following months consisted of many appointments, with the Implant Team, our Local Audiologist, our Paediatrician, and our Health Visitor.  We also had appointments that confirmed she had no visual impairments.

Days after diagnosis, we were contacted by our Advisory Teacher.  This initial meeting was extremely important for Ed and I.  To talk to someone about Isla’s future and to ask questions that seemed too silly to ask anyone else.  The comfort that we gained from this first meeting was priceless, and the confidence that we gained would see us looking at Isla’s future in a completely different light.  It helped that Isla’s teacher and Isla’s Key contact from The Implant Centre were able to support Olivia as well, who seemed to be struggling with her sisters diagnosis, and was concerned for Isla’s future wellbeing. I joined a Pre-school group set up by the Hearing Support Service, where I got to meet lots of teachers, mums and carers and Shirley and Nicola from Dorset Deaf Children’s Society.  Having this support network is extremely important to me and my family, and it has made things easier to handle by having the opportunity to meet with others in a similar situation.  It is also great to join in the activities organised by Dorset Deaf Children’s Society that can include not only Isla, but her older sister too.

I started blogging about Isla’s Journey as soon as she was diagnosed.  I felt that I wanted to educate and inform people of the ins and outs of raising a child with hearing loss and hopefully provide some comfort to other parents in similar situations.   As soon as we found out the news, we went straight to the internet to educate ourselves and to gain awareness on what life for Isla was going to be like.  And finally I can now tell you, that it will be no different to any other child. She is due to have Cochlear Implants that will give her the opportunity to hear sounds, but for now, she is completely deaf.  We have fully embraced British Sign Language and have signing nights at home, so my family can practice signing, and be confident and comfortable when communicating with Isla.

Isla couldn’t have fallen into better hands.  She has a wonderful family, and support network.  She has not only inspired me, but as every day goes by, she teaches me something different.  How we communicate with each other, is completely taken for granted. What am I doing with my hands? What expression am I showing? What distractions are there?  All I want to do is educate others, and let them know, that it’s ok.  We are ok.  Isla is ok.

Isla is now 9 months old.  She’s very vocal and usually very happy (when she’s getting her own way!)  She is an extremely sociable baby, and enjoys being around lots of people. She is VERY loud and has the most striking, brown eyes, that she uses to get everyone’s and anyone’s attention! She enjoys the beach, swimming and long walks. As a family, we can’t wait to see what Isla’s future holds.

Isla will receive bilateral cochear Implants around her first birthday in June

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