Aaliyah's Journey...

Her story so far, through the eyes of loving parents


Amy, Jose & Aaliyah 


Many of you would have seen the popular childrens film, Finding Nemo. Its about a fish with a “lucky” fin. Well our little princess Aaliyah was born with a “lucky” ear. A congenital birth defect called Microtia with Atresia. Basically she has a little ear with the absence of an external canal. In order to “fix” her ear she will need an operation in Palo Alto, California, USA when she is approximately 3 years of age (towards the end of 2012 / beginning of 2013). However, this surgery comes with a hefty price tag (currently in excess of $65,000 USD (plus travel expenses)). 

One of the big questions we get asked is why we have chosen surgery and why not leave her ear as it is. One comment many people make is that they don't really notice it and that she is a girl so she can just wear her hair long.

 

Before we had Aaliyah, I would have been one of those people, because lets face it, it isnt a life threatening abnormality and yes, she is a girl so wearing her hair long is always an option. But thats just it, we want her to HAVE options. We want her to walk with her head held high, knowing that she has every opportunity that every other little girl has. To wear her hair in a pony tail and know that people are not going to stare or comment (and believe me, the comments have already started coming, thankfully she is too young to notice). We also want her to be able to HEAR, in BOTH ears. To be able to cross the street and hear a car coming at the same time as people of normal hearing.

 

It has also been suggested that adults with hearing loss of some degree whether unilateral (one sided) or bilateral (both) are less likely to get a university degree and are more likely to spend their life on minimum wage or unemployed. Would YOU want this for your child? Most parents want their child to succeed in every aspect of their life. We are no different. We want Aaliyah to walk through life knowing that she can achieve anything she sets her mind to. Yes, these things are possible if we left her special ear as it is. But it will be a lot more challenging. That is not what we want for our daughter.

 

Another common question is why America, surely there is something available in Australia.

 

We are very fortunate to live in this beautiful country. We have a fantastic health care system that avails good health care to all citizens no matter their socio economic status. We have researched our options, both in Brisbane (where we live) and throughout Australia. We have met with many healthcare professionals from all over Australia. At this stage their is no doctor in Brisbane that performs the medpor reconstruction (the outer ear). Aaliyah has a wonderful ear doctor. We asked him why he doesn't do the surgery or why  others in Brisbane don't do it. He said that the ear is a very tricky organ to work on and microtia kids are exceptionally difficult. He said that he would rather see and work on 1000 cochlear implants than do surgery on one microtia child. Microtia is rare, and it is only recently that people have started to perform reconstructive surgery. We have talked to other doctors in Brisbane and they all gave us the same plan , chop of her ear and put a prosthetic ear on. To many people this would make sense, but not to us. If we were to "chop of her ear" and put a prosthetic ear on, everytime she goes swimming she would have to remove it. Could you imagine a her at her school swimming carnival, having to ask her teacher to hold her ear whilst she races. Or when she is at a sleepover, and she takes it of to go to sleep. Whilst the other girls just worry about cleaning their teeth she has to clean her ear and the attachments on her skull. Never mind the fact that chopping her ear of would not help her hearing in anyway.

 

We met with a well known ear surgeon based in Melbourne. He is willing to perform recontructive surgery, however uses a method that requires up to 6 surgeries and has very mixed results. It involves taking some of the childs rib and shaping it into an ear, he does not perform the canalplasty, the other part of Aaliyahs surgery. He also will not operate on any child under 8 and he believes that a child has a right to chose whether they want surgery or not. This goes against all research that suggests that optimal hearing must be achieved by age 5 in order for optimal development. Needless to say we were not impressed.

 

Drs Robertson and Reinisch are the surgeons from California that will perform Aaliyahs surgery. They have have over 20 years experience performing this surgery. They are, what we believe to be, the best possible option for Aaliyah. They have performed surgery on children all over the world with a 100% success rate.


This page will be progressively added to over time as more information is gathered. Last updated 12 September 2011.

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