Hayleys Microtia Surgery
Donation protected
Hayley Jade Lord
The picture you see on this page is of our beautiful, cheeky, strong willed little girl, Hayley.
Hayley was born with Microtia and Atresia.
In summary, for those who haven't heard of this, it means (in its simplest description) that Hayley was born without a right ear and we're trying to raise funds for the reconstructive surgery for this.
"Microtia and Atresia are lesser known congenital birth defects that can impact on a child's hearing. Microtia [is a] congenital disorder [which] occurs in 1 in 6,000 births world-wide. It causes a deformity of one or both ears in which the outer ear is underdeveloped or absent. Microtia is almost always accompanied by Atresia because the baby's outer ear and the ear canal develop together during pregnancy. Atresia is the absence of an external ear canal and in many instances the ear drum and ear bones can also be affected. This means that as there is no canal for sound to travel through, these children are born with a conductive hearing loss." (http://www.hearandsay.com.au/AboutHearing/HearingLoss/MicrotiaAndAtresia/ - sited 6/10/2016)
Further information can also be found here; http://www.aussiedeafkids.org.au/a-child-with-microtia-and-atresia.html#06
In Hayley's case, as explained briefly above, her right outer ear and ear canal did not fully develop, causing a conductive hearing loss.
Although Hayley is a happy, healthy little girl in all other aspects of her life, our aim is to provide Hayley with a right ear and the ability to hear just like you and I.
Amy fell pregnant with Hayley in 2013, it was always her dream to have children and Simon and Amy were so excited to be starting their family. Amy's pregnancy was textbook, no problems and nothing at all was detected by scans.
When Hayley was born, no one in the hospital had seen or heard of Microtia Atresia before and Amy and Simon were told that their little girl may never be able to hear. This was a devastating blow to their family and from that moment forward Amy and Simon dedicated most of their time to research, see various specialists, join organisations and communities both in Brisbane and online, all in an effort to find the best people equipped to help Hayley with whatever the next steps for her would be.
In this search, they came across the people who perform the world’s only combined Microtia Atresia surgery, Dr John Reinisch, a Craniofacial and Paediatric Plastic Surgeon who specialises in Microtia, he is located in California in the United States. (Website can be seen here; http://www.drjohnreinisch.com/).
All they could do at the hospital was refer Hayley to specialists, Amy and Simon got the referrals and had a long 6 week wait to find out whether their baby girl would ever be able to hear. When Hayley was 6 weeks old they had further contact with Ear, Nose and Throat Specialists who were able to do further testing and determine that Hayley did have hearing through her left ear but that she has conductive hearing loss on her right side.
In the coming months they received a contact mini hearing aid which they were grateful for, wearing the headband with the hearing aid gave Hayley the gift of sound and helped her become a lot more responsive, however they experienced great difficulty getting Hayley to keep this on.
Hayley was then enrolled in an early intervention program at hear and say, receiving weekly one on one speech therapy sessions and participating in their weekly "leap" group program. With the help of this program and Amys ongoing dedication, Hayley was delayed but beginning to talk.
Next, Hayley got a Baha 4 hearing aid. This made a huge difference to Hayleys development as it provided the clarity of sound that she needed at this stage of her life.
As Hayley learnt to walk she developed a tip toe habit, specialists and physiotherapists determined that this came from her middle ear not being formed. This meant more appointments and Hayley sees a physiotherapist on a regular basis to try to correct this habit.
Amy, Simon and Hayley attend a Microtia conference every year where Dr Reinisch and other medical professionals gather to help and educate families who want to learn about Microtia and Atresia and the possibilities surrounding the outer ear and ear canal reconstruction surgery.
This year Hayley was old enough to be able to have a CT Scan to enable the surgeons to examine Hayley's inner ear and assess whether she was a candidate for the surgery.
Hayley scored a 7 out of 10, she was marked down a few points as she has an eye artery in the way of where surgeons need to be and not enough of her middle ear has been developed for them to say with confidence that they would be able to create an ear opening and give her hearing from her new ear. Based on the surgeons recommendations Simon and Amy have decided to go ahead with the Medpor surgery for Hayley to reconstruct her outer ear, but as Dr Reinesch has advised it is a big risk and that she will most likely still need a hearing aid, they decided against the ear canal surgery to correct the Atresia.
Hayley’s surgery will cost Amy and Simon $39,100US (approx. $52,000AUD as at 27/10/16), plus travel expenses in excess of $20,000AUD to get to the US and stay there for a month to ensure they can monitor her recovery. Amy and Simon have been saving since Hayley was born but with the ongoing costs associated with Hayley’s condition (private health insurance, hearing aids, early intervention through hear and say, speech therapy, physiotherapy etc.) they have not been able to save this amount in such a short period of time.
With over $70,000 worth of costs, they now need your help to make up the difference.
Any donation big or small will make a huge difference to Hayley’s future.
We appreciate everyone’s support.
Thank you!
The picture you see on this page is of our beautiful, cheeky, strong willed little girl, Hayley.
Hayley was born with Microtia and Atresia.
In summary, for those who haven't heard of this, it means (in its simplest description) that Hayley was born without a right ear and we're trying to raise funds for the reconstructive surgery for this.
"Microtia and Atresia are lesser known congenital birth defects that can impact on a child's hearing. Microtia [is a] congenital disorder [which] occurs in 1 in 6,000 births world-wide. It causes a deformity of one or both ears in which the outer ear is underdeveloped or absent. Microtia is almost always accompanied by Atresia because the baby's outer ear and the ear canal develop together during pregnancy. Atresia is the absence of an external ear canal and in many instances the ear drum and ear bones can also be affected. This means that as there is no canal for sound to travel through, these children are born with a conductive hearing loss." (http://www.hearandsay.com.au/AboutHearing/HearingLoss/MicrotiaAndAtresia/ - sited 6/10/2016)
Further information can also be found here; http://www.aussiedeafkids.org.au/a-child-with-microtia-and-atresia.html#06
In Hayley's case, as explained briefly above, her right outer ear and ear canal did not fully develop, causing a conductive hearing loss.
Although Hayley is a happy, healthy little girl in all other aspects of her life, our aim is to provide Hayley with a right ear and the ability to hear just like you and I.
Amy fell pregnant with Hayley in 2013, it was always her dream to have children and Simon and Amy were so excited to be starting their family. Amy's pregnancy was textbook, no problems and nothing at all was detected by scans.
When Hayley was born, no one in the hospital had seen or heard of Microtia Atresia before and Amy and Simon were told that their little girl may never be able to hear. This was a devastating blow to their family and from that moment forward Amy and Simon dedicated most of their time to research, see various specialists, join organisations and communities both in Brisbane and online, all in an effort to find the best people equipped to help Hayley with whatever the next steps for her would be.
In this search, they came across the people who perform the world’s only combined Microtia Atresia surgery, Dr John Reinisch, a Craniofacial and Paediatric Plastic Surgeon who specialises in Microtia, he is located in California in the United States. (Website can be seen here; http://www.drjohnreinisch.com/).
All they could do at the hospital was refer Hayley to specialists, Amy and Simon got the referrals and had a long 6 week wait to find out whether their baby girl would ever be able to hear. When Hayley was 6 weeks old they had further contact with Ear, Nose and Throat Specialists who were able to do further testing and determine that Hayley did have hearing through her left ear but that she has conductive hearing loss on her right side.
In the coming months they received a contact mini hearing aid which they were grateful for, wearing the headband with the hearing aid gave Hayley the gift of sound and helped her become a lot more responsive, however they experienced great difficulty getting Hayley to keep this on.
Hayley was then enrolled in an early intervention program at hear and say, receiving weekly one on one speech therapy sessions and participating in their weekly "leap" group program. With the help of this program and Amys ongoing dedication, Hayley was delayed but beginning to talk.
Next, Hayley got a Baha 4 hearing aid. This made a huge difference to Hayleys development as it provided the clarity of sound that she needed at this stage of her life.
As Hayley learnt to walk she developed a tip toe habit, specialists and physiotherapists determined that this came from her middle ear not being formed. This meant more appointments and Hayley sees a physiotherapist on a regular basis to try to correct this habit.
Amy, Simon and Hayley attend a Microtia conference every year where Dr Reinisch and other medical professionals gather to help and educate families who want to learn about Microtia and Atresia and the possibilities surrounding the outer ear and ear canal reconstruction surgery.
This year Hayley was old enough to be able to have a CT Scan to enable the surgeons to examine Hayley's inner ear and assess whether she was a candidate for the surgery.
Hayley scored a 7 out of 10, she was marked down a few points as she has an eye artery in the way of where surgeons need to be and not enough of her middle ear has been developed for them to say with confidence that they would be able to create an ear opening and give her hearing from her new ear. Based on the surgeons recommendations Simon and Amy have decided to go ahead with the Medpor surgery for Hayley to reconstruct her outer ear, but as Dr Reinesch has advised it is a big risk and that she will most likely still need a hearing aid, they decided against the ear canal surgery to correct the Atresia.
Hayley’s surgery will cost Amy and Simon $39,100US (approx. $52,000AUD as at 27/10/16), plus travel expenses in excess of $20,000AUD to get to the US and stay there for a month to ensure they can monitor her recovery. Amy and Simon have been saving since Hayley was born but with the ongoing costs associated with Hayley’s condition (private health insurance, hearing aids, early intervention through hear and say, speech therapy, physiotherapy etc.) they have not been able to save this amount in such a short period of time.
With over $70,000 worth of costs, they now need your help to make up the difference.
Any donation big or small will make a huge difference to Hayley’s future.
We appreciate everyone’s support.
Thank you!
Organizer
Alyce Johnson
Organizer
Cleveland QLD
