Fear of the Unknown- Lila's Story – Break the Sound Barrier

Fear of the Unknown- Lila’s Story

May 11, 2017

lila-smileMy first child, and daughter Lila’s hearing loss came as a big surprise to us. We knew from when I was 12 weeks pregnant that there were going to be health complications with my daughter.

At 27 weeks pregnant, a cardiologist diagnosed her with two heart conditions that would need to be repaired within the first 6 months of her life. We were obviously devastated and hoped that the diagnosis was wrong. Soon after this, the doctors advised us that the heart conditions may be associated with a Syndrome, most probably 22q. We were given information on what this would mean, and researched it extensively. We tried to prepare ourselves with anything the syndrome would throw at us. When my daughter was born, blood was taken to test for 22q.
She had her first heart surgery at 19hrs old. Her recovery was hard and she remained in ICU for close to a month. Doctor after doctor came to us with news of something else that they found was wrong. I spent my days by her bed crying and trying to pick myself up from each new diagnosis i was given.
Lila was only a few days old when the technician came through to perform the SWISH test. She warned us that due to Lila’s recent surgery the results of the test may not be accurate. Lila failed the test and the technician casually said to me ‘if she is deaf, it’s the best thing these days, as they can put something on her head and she can hear’. I was angry and not prepared to hear that she might have a hearing loss. This was not one of the things that people with 22q had, and I hadn’t prepared myself for it.
I was so upset with the techicians bedside manner , and could not understand why she had even mentioned she might be deaf, after telling me the test may be inaccurate. I put a complaint into the hospital and asked for their technicians to get better training in how to approach parents if the SWISH test came back as a possible hearing loss.
A few weeks later the results from the blood test came back. No Syndrome was detected. The next day genetics came to us, took us into a small room and told us that they had realised what my daughter had. They told me she had CHARGE Syndrome, and was probably deaf and blind.
Test after test was performed and Lila was diagnosed with bilateral severe to profound hearing loss, she has a Coloboma in her right eye, causing a blind spot and many other health issues.
All I could think about was the technician saying ‘they could put something on her head and she could hear’. I had no idea what it was or how it worked, but prayed that whatever it was, she would be able to hear.
We met with an amazing Cochlear Implant surgeon, who specialises in CHARGE Syndrome. She warned me that CHARGE kids often have absent auditory nerves and if they do have them, they are often too small to be able to successfully use a Cochlear Implant. I was devastated.
She was right, Lila’s nerves were small, and one appeared absent on the MRI. The doctors told us to be prepared for the Implants to only give her access to environmental sound and not speech. I did not know how to deal with this possibility and had no idea what it meant for Lila’s future.
Years of Speech therapy, appointments after appointments and lots of hard work. Lila’s cochlear’s are successful. She is hearing and speaking, despite all odds.
The journey of my first child is nothing like I had imagined. She makes me so proud and honoured to be her mother. Her strength and determination have made me a better person. I have had to muster up strength of my own, that I didn’t know I had in me to cope during the hard times and support her. There is nothing she cant do.
I no longer fear my daughter’s hearing loss, but am excited by it. We have started to use Key Word Sign to help her communicate when she doesn’t have her ‘ears’ on. She picks it up so easily, and it has allowed us to be able to help her understand and communicate her needs better.
Reflecting back on my reactions to Lila’s diagnosis when she was first born, I wish I knew what I do now. I realise now that it was my ignorance and lack of knowledge to what hearing loss meant, that caused me to have so much fear around it.
We have been so lucky to be exposed to a community of the most wonderful people, helping us and caring for my daughter and showing us anything it possible. It’s a world I never knew existed and I feel so privileged to be apart of. It would be great to break the sound barrier, and help others to understand.

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