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ASHTON'S STORY
- Written by Monique (Ashton's Mother) - January 2025
When our little Ashy was born prematurely and graduated from the NICU the last tick to be discharged was his SWISH test which he passed, and we left for home not ever thinking about hearing loss for him.
Ashton didn’t really babble but I kept telling myself he would talk in his own time and as parents for the past 15 years we thought Ashton would flourish in Ashton time not by a book, and he didn’t show signs of delays to raise concerns, but he was experiencing some health concerns which I couldn’t put my finger on exactly what was wrong, but I knew in my gut and as a mum something wasn’t quite right. After months of hospital admissions, appointments & tests and pushing for answers Ashton was diagnosed with a rare genetic condition I hadn’t even heard of but along with the many complications of this condition was hearing loss which I didn’t think Ashton had as he seemed to be able to hear, Ashton attends daycare at Dubbo Early Learning Centre and has a very close bond with his educators and they didn’t seem to think Ashton had any hearing concerns and neither did we as parents. Ashton attended a hearing appointment his pediatrician had arranged in Westmead Children’s Hospital due to his newly diagnosed condition as a precautionary to rule out hearing loss which is known to Ashtons condition. When we took Ashton to the appointment, I walked in confident we were just ruling out complications but when Ashton failed the hearing test, and the audiologist explained Ashton had hearing loss I was beside myself, speechless but also upset in myself that I didn’t pick up that Ashton couldn’t hear. The appointment seemed a blur and I didn’t recall much of the information as I was so shocked and upset so I contacted a friend who has a child with hearing loss for support, but she also works for Hear our Heart to ask many questions and to help me understand the report and audiogram and what to do now.
I was given the opportunity to attend the Hear our Heart community day for a screening where no question was silly and I was assured and supported with Ashtons journey, after attending it was found Ashton ear canals were noticeably smaller and he was experiencing an ear infection at the appointment which I didn’t even know about because Ashton likely has had many infections it has become his normal to him and he hadn’t given off any cues of a current infection. The small ear cannels finding were also later confirmed but Ashtons ENT specialist.
After the first appointment the staff didn’t just speak to me, the Heart our Heart staff also spoke to Ashton and interacted with him to make him feel included, safe and not in an uncomfortable environment. Together with Ashtons Hear our Heart, the ENT specialist & Hearing Australia Ashton has recently been fitted with a bone conductor aid/device.
Since receiving the device Ashtons whole personality has changed. His speech improved dramatically, along with his word vocabulary growing almost overnight as before the device Ashton was very loud, didn’t repeat many words and often only reacted to few sounds, didn’t seem to listen and comminuted in actions rather than verbally. The day Ashton was fitted with his device he heard a plane in the sky for the first time and knew what a plane was by sight but had never noticed they also make a sound and seemed confused at first but very excited by the sound.
Ashton now visits Hear our Heart regularly and is happy to have his ears looked at and now has even gained confidence at 1.5 years old to not even sit on mum's lap for his visits showing his ears off for checking himself. Ashton will later this year also have grommets fitted along with his ENT surgery to hopefully improve his ear health and hearing.
We still do not know if Ashtons hearing loss is permanent, but I do know I have the support of Hear our Heart to guide us through the unknowns. Without contacting Hear our Heart I would still be at home not knowing about the structural abnormality of Ashtons ear canals, not seeing an ENT that specialises in children with similar conditions like Ashton to confirm the findings and also a booking for grommet surgery, no hearing device to assist Ashton to hear and waiting for a rescreening at Westmead Children’s Hospital booked 12 months after the initial appointment to see if Ashton’s hearing improved, declined or stayed the same then to decide what to do now as Ashtons initial condition is rare and limited information is known on what to expect.
Having Hear our Heart right in town at our doorstep and easily accessible has been life-changing for Ashton
When our little Ashy was born prematurely and graduated from the NICU the last tick to be discharged was his SWISH test which he passed, and we left for home not ever thinking about hearing loss for him.
Ashton didn’t really babble but I kept telling myself he would talk in his own time and as parents for the past 15 years we thought Ashton would flourish in Ashton time not by a book, and he didn’t show signs of delays to raise concerns, but he was experiencing some health concerns which I couldn’t put my finger on exactly what was wrong, but I knew in my gut and as a mum something wasn’t quite right. After months of hospital admissions, appointments & tests and pushing for answers Ashton was diagnosed with a rare genetic condition I hadn’t even heard of but along with the many complications of this condition was hearing loss which I didn’t think Ashton had as he seemed to be able to hear, Ashton attends daycare at Dubbo Early Learning Centre and has a very close bond with his educators and they didn’t seem to think Ashton had any hearing concerns and neither did we as parents. Ashton attended a hearing appointment his pediatrician had arranged in Westmead Children’s Hospital due to his newly diagnosed condition as a precautionary to rule out hearing loss which is known to Ashtons condition. When we took Ashton to the appointment, I walked in confident we were just ruling out complications but when Ashton failed the hearing test, and the audiologist explained Ashton had hearing loss I was beside myself, speechless but also upset in myself that I didn’t pick up that Ashton couldn’t hear. The appointment seemed a blur and I didn’t recall much of the information as I was so shocked and upset so I contacted a friend who has a child with hearing loss for support, but she also works for Hear our Heart to ask many questions and to help me understand the report and audiogram and what to do now.
I was given the opportunity to attend the Hear our Heart community day for a screening where no question was silly and I was assured and supported with Ashtons journey, after attending it was found Ashton ear canals were noticeably smaller and he was experiencing an ear infection at the appointment which I didn’t even know about because Ashton likely has had many infections it has become his normal to him and he hadn’t given off any cues of a current infection. The small ear cannels finding were also later confirmed but Ashtons ENT specialist.
After the first appointment the staff didn’t just speak to me, the Heart our Heart staff also spoke to Ashton and interacted with him to make him feel included, safe and not in an uncomfortable environment. Together with Ashtons Hear our Heart, the ENT specialist & Hearing Australia Ashton has recently been fitted with a bone conductor aid/device.
Since receiving the device Ashtons whole personality has changed. His speech improved dramatically, along with his word vocabulary growing almost overnight as before the device Ashton was very loud, didn’t repeat many words and often only reacted to few sounds, didn’t seem to listen and comminuted in actions rather than verbally. The day Ashton was fitted with his device he heard a plane in the sky for the first time and knew what a plane was by sight but had never noticed they also make a sound and seemed confused at first but very excited by the sound.
Ashton now visits Hear our Heart regularly and is happy to have his ears looked at and now has even gained confidence at 1.5 years old to not even sit on mum's lap for his visits showing his ears off for checking himself. Ashton will later this year also have grommets fitted along with his ENT surgery to hopefully improve his ear health and hearing.
We still do not know if Ashtons hearing loss is permanent, but I do know I have the support of Hear our Heart to guide us through the unknowns. Without contacting Hear our Heart I would still be at home not knowing about the structural abnormality of Ashtons ear canals, not seeing an ENT that specialises in children with similar conditions like Ashton to confirm the findings and also a booking for grommet surgery, no hearing device to assist Ashton to hear and waiting for a rescreening at Westmead Children’s Hospital booked 12 months after the initial appointment to see if Ashton’s hearing improved, declined or stayed the same then to decide what to do now as Ashtons initial condition is rare and limited information is known on what to expect.
Having Hear our Heart right in town at our doorstep and easily accessible has been life-changing for Ashton
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LOCATION:
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ADDRESS:
24 Erskine Street Dubbo NSW, 2830 PO BOX 1923 Office Email: [email protected] Directors Email: [email protected] |
Office: (02) 6884 8751 / 0483 831 698
Director Donna Rees: 0419 534 447 Director Rachel Mills: 0413 687 671 OFFICE HOURS: Monday - Friday 9:00am -3:00pm |
