When Isla was in the nursery room in SCBU, she finally got to have her newborn hearing screen. I say finally, it had only been a week, yet it was something I had worried about for a long time. Babies with a cleft are prone to glue ear and hearing loss which is something we had been warned about during my pregnancy so I was keen to know if Isla was affected. She hadn’t responded to many noises during her time in NICU but we were unsure if that was just because she was focussing on getting stronger.
Isla failed both parts of the newborn hearing screen. The screeners explained to us that this was not a definitive test and as she had been born by C-section, she could still have fluid in her ears. We would be sent an outpatients appointment to attend the children’s hearing clinic (along with what felt like hundreds of other appointments!) and they would undertake further testing.
When we got home, I began to notice that Isla did not respond to many noises and that she wasn’t settled by my voice unless she was on my chest. Carrying her in the sling settled her as she could feel the vibrations from me talking and it also meant that I could carry on with day to day tasks as well as playing with my toddler.
We had various appointments at the Children’s Hearing Clinic over the coming months where it was found that Isla had a bilateral conductive hearing loss. After much testing and consultation, we were given two options; wait and see, possibly considering grommets at palate repair, or a bone conduction hearing aid. For us, this was not a choice. We already knew that Isla may have problems with speech because of her cleft palate so adding in a hearing loss at a critical stage for speech development in infancy felt too much of a risk. By using a hearing aid, we would give Isla the best chances in her speech sound development.
Isla had her hearing aid fitted on 11th November 2016. I videoed her initial reaction and it must have been amazing to her as her reaction was priceless! It took some adjustment for all of us; Isla had a whole new world of sound to discover and we had to work out what she could hear and the signals of it becoming overwhelming for her. When she becomes overwhelmed with sound, she rubs her head which displaces the band causing a feedback noise so we now take it off for car journeys and sleep.
I have found carrying Isla in the sling has needed some adjustments. I keep a careful eye on the placement of the hearing aid to prevent loud and painful feedback noises. I also check that the volume control has not been knocked when putting her into the sling. I think that keeping her close with her hearing aid on in public has prevented her from becoming overwhelmed as she can snuggle in. It also means that I can keep a close eye on her and the band. When I do back carry, I use a mirror or my phone camera to check that everything is as it should be. If it’s not, she soon lets me know! I have also recently purchased a fiddle necklace to wear which stops her playing with both her hearing aid & feeding tube!
Isla will be followed up by the Children’s Hearing Clinic until at least 19 years of age, whatever her hearing is like, because of the care pathway for children with a cleft lip and palate. We hope that her hearing will improve as she grows but for now, she’s rocking the headgear!
(Special thanks to my lovely best friend’s mum who has made extra, pretty bands for her aid!)