Our son Liam was due to arrive at around the same time that his sister Bella was going to go through an extremely dangerous brain surgery that could have taken her life. We did not know how we were going to juggle both issues as we were still living in the hospital with Bella.

Liam did wait until his due date of Nov. 20, 2008 a day after we all came home for the first time since Sept 7. It was to be a fresh new beginning to our horrible situation. Though upon his arrival, the delivery room nurse said "Did you know he has a deformed ear?" It was a complete shock to us and immediately drained us of our joy. We thought how could this happen to him after all we endured with our poor precious Bella.

It was a very lonely feeling for us, we were worried about all the other things that could be wrong with Liam especially his brain and development. Would we now have to prepare for a life with 2 special needs kids? We had no idea what the outcome would be. We were told that his condition was called microtia.

As the months went on and the doctors appointments piled up one after another, Liam was developing normally. Then the final diagnosis of goldenhar syndrome was given,...what? The next question we had was could Liam suffer the same fate as Bella? While doctors were taking a look at his microtia we had them request a scan of his entire brain. That is when the mass was found on his Brain stem. Unrelated to his sisters AVM, it was just a random thing.

Liam endured many MRI's under general anesthesia to follow the growth of the tumor. Then in Dec., 2010 he underwent brain surgery to remove and biopsy the tumor. He still must go through these MRI's every 3 months to watch part of the tumor that had to be left in place because it is right on the brain stem. We are grateful that it was NOT cancer but the proximity to the brain stem made it so dangerous.

Through all of this, he remains a happy little boy with a lot of energy despite the right side weakness that the surgery has left him with and the facial deformities of microtia. He is following in his big sisters footsteps. Liam is very helpful with Bella and tries to get involved in all of her care too. He has learned to conform to our different lifestyle. He doesn't know any other way of life.

There was a chance that Liam could have lost his speech after the surgery. Not so, as he is very talkative and loves to sing all day long. He has a good ear for music and plays all sorts of instruments especially the drums! He likes to help do everything "by himself".

The tumor may have to be revisited if it increases in size so we hope that doesn't have to happen. If doctors have to go back in, there could be additional lasting effects to his motor skills. We really get anxious after everyone of his MRI's.

Our hopes are that Liam can live as normal of a life as any child deserves. Also that he does not develop any additional complications from his goldenhar syndrome. We will leave the decision for plastic surgery up to Liam. It can't be done until after he is five. That gives us all time to research and weigh the pros and cons of different procedures.

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