Alana May Reid
Our Story - Alana May Reid
Our daughter Alana was born on September 11 2008. My husband and I were so excited, a little sister for our son Bailey. We noticed her right ear was quite small, but were
assured that it would probably grow with Alana. The next day Alana had her
newborn screening test, which resulted in a “refer” for both ears.
We went home devastated that our little girl could not hear us. We thought no, it can’t
be right – we have no family history.
One week later we received a call from the hospital to bring Alana in asap – I recall being at the hairdresser, and trying to hold it together, while they hurried my appointment along.
We took Alana back to the hospital were the doctors told us that there is a problem with
her thyroid function and further test must be carried out, but would start her
on thyroxine to start with. The next day she was injected with radiation to have
a nuclear scan of her full body. This showed she had an absent thyroid gland.
The doctors kept Alana in hospital for a few days for more tests.
At four weeks of age Alana was not gaining weight at a normal rate and just seemed to
sleep her days and nights away.
We returned to hospital where we were transferred to Royal Children’s Hospital Brisbane. We stayed for over a week for testing.
All was confirmed – Alana had failure to thrive, an ASD in her heart, kidney reflux, an absent thyroid gland, bilateral conductive hearing loss and microtia of her right ear and narrowing of bilateral ear canals – which we then found out, would not grow any bigger on their own. We went home relieved we had results, but upset and angry that our little darling could not hear us.
Christmas Eve 2008 Alana was fitted with a bone conduction hearing aid at Australian Hearing Brisbane, which she wears on a soft head band.
At four months of age I contacted the Hear and Say centre in Brisbane, where Alana
was then enrolled for fortnightly lessons and assessments.
Alana is seen on a regular basis by a group of specialist doctors at RCHB. Her cardiologist monitors her heart and she may need heart surgery in the future. Her kidneys, T4 and TSH levels are monitored through the paediatric and endocrine team. Along
the way new problems have appeared, last year Alana had to have her teeth capped
in silver as she has an enamel deficiency, without the capping Alana’s teeth
would have ground away.
Each year for the past four years we have attended the microtia and atresia conference held on the Gold Coast and Brisbane where specialist in this field from USA have seen Alana and given us hope that her hearing may be fixed, and they can even give her corrective surgery using a new medpor technique to correct the outer ear, and widen her ear canals to correct the hearing, this is not available in Australia. Last year in 2012 we
met with Dr Roberson - the American ENT specialist, who said Alana has a score
of nine out of ten (he said they never give ten) chance to have her hearing graded in the normal range after the operation.
We have spoken with other families, who have children that had microtia and visited the USA, we have contemplated and researched this decision for four years and have now decided that this surgery is what we feel is best for our little girl. We want her to
reach her full potential in life and she may have been born with a lot of
different congenital problems, but we're hoping to fix what we can, to make her
life easier, without the burden of looking and feeling different.
To have this surgery for Alana is the best option, and this does come at a high price,
$97,000 is what we need to raise to cover the cost, as it is not covered by
Medicare or any private health insurance.
We are hoping to fund-raise the rest of the costs of the surgery and trip, Alana has now been given the date of August 13, 2013 which will be 12 months to the date we started our journey of fundraising. We would truly appreciate any assistance you can offer us to make our dream for our little girl become a reality.
Shane and Emma Reid
Our Story - Alana May Reid
Our daughter Alana was born on September 11 2008. My husband and I were so excited, a little sister for our son Bailey. We noticed her right ear was quite small, but were
assured that it would probably grow with Alana. The next day Alana had her
newborn screening test, which resulted in a “refer” for both ears.
We went home devastated that our little girl could not hear us. We thought no, it can’t
be right – we have no family history.
One week later we received a call from the hospital to bring Alana in asap – I recall being at the hairdresser, and trying to hold it together, while they hurried my appointment along.
We took Alana back to the hospital were the doctors told us that there is a problem with
her thyroid function and further test must be carried out, but would start her
on thyroxine to start with. The next day she was injected with radiation to have
a nuclear scan of her full body. This showed she had an absent thyroid gland.
The doctors kept Alana in hospital for a few days for more tests.
At four weeks of age Alana was not gaining weight at a normal rate and just seemed to
sleep her days and nights away.
We returned to hospital where we were transferred to Royal Children’s Hospital Brisbane. We stayed for over a week for testing.
All was confirmed – Alana had failure to thrive, an ASD in her heart, kidney reflux, an absent thyroid gland, bilateral conductive hearing loss and microtia of her right ear and narrowing of bilateral ear canals – which we then found out, would not grow any bigger on their own. We went home relieved we had results, but upset and angry that our little darling could not hear us.
Christmas Eve 2008 Alana was fitted with a bone conduction hearing aid at Australian Hearing Brisbane, which she wears on a soft head band.
At four months of age I contacted the Hear and Say centre in Brisbane, where Alana
was then enrolled for fortnightly lessons and assessments.
Alana is seen on a regular basis by a group of specialist doctors at RCHB. Her cardiologist monitors her heart and she may need heart surgery in the future. Her kidneys, T4 and TSH levels are monitored through the paediatric and endocrine team. Along
the way new problems have appeared, last year Alana had to have her teeth capped
in silver as she has an enamel deficiency, without the capping Alana’s teeth
would have ground away.
Each year for the past four years we have attended the microtia and atresia conference held on the Gold Coast and Brisbane where specialist in this field from USA have seen Alana and given us hope that her hearing may be fixed, and they can even give her corrective surgery using a new medpor technique to correct the outer ear, and widen her ear canals to correct the hearing, this is not available in Australia. Last year in 2012 we
met with Dr Roberson - the American ENT specialist, who said Alana has a score
of nine out of ten (he said they never give ten) chance to have her hearing graded in the normal range after the operation.
We have spoken with other families, who have children that had microtia and visited the USA, we have contemplated and researched this decision for four years and have now decided that this surgery is what we feel is best for our little girl. We want her to
reach her full potential in life and she may have been born with a lot of
different congenital problems, but we're hoping to fix what we can, to make her
life easier, without the burden of looking and feeling different.
To have this surgery for Alana is the best option, and this does come at a high price,
$97,000 is what we need to raise to cover the cost, as it is not covered by
Medicare or any private health insurance.
We are hoping to fund-raise the rest of the costs of the surgery and trip, Alana has now been given the date of August 13, 2013 which will be 12 months to the date we started our journey of fundraising. We would truly appreciate any assistance you can offer us to make our dream for our little girl become a reality.
Shane and Emma Reid