Friday, 10 June 2011

Spinal Conference

Last week we got an amazing opportunity. A spinal conference was conducted at Westmead with specialist surgeons from Australia and overseas. My doctor had originally informed us he would show Evelyne's x-rays to them to get their feedback on future treatment. Last week I got an email requesting that Evelyne come to be presented!

It was a strange day.  I was so excited and nervous about what would happen.  I had no idea what to expect. My only information was that she would be 'presented in a lecture theatre'. I was excited that we got the oppotunity to be assessed by overseas specialists, yet nervous about how they would treat her.

We arrived along with 4 other children and their parents and were led into a room next to the lecture theatre.  We were told that one by one we would be called for to be 'presented'.  While we waited (approx 2 hrs) we were supplied with catered food and drink and got the chance to relax and chat.  One parent commented on how well we were being treated.  Another stated "That's because we're the entertainment!"  My doctor was also being especially nice. Were they helping us? Or were we helping them learn?  

It was a bit of both I think.  When Evelyne was presented, information about Beals Syndrome was also presented.  It was clear that some may not have been that familiar with this disorder. She was laid on a bed at the front of the conference (approx 40-50 people) and given a teddy to hold. While the majority of the conference stayed in their seats making notes, 4 doctors came forward to examine her.  I was impressed with how well they treated her and how well she behaved. One in particular knelt down and talked to her and showed her his funny cartoon tie.

After only 5-10 minutes being assessed, we were asked to leave so the doctors could discuss her case.  Last night I finally got a phone call from the doctor with feedback (the special treatment only lasted as long as the conference!).

The news however is more promising than our last assessment.  The specialists (I think from the U.S) suggested an alternate brace design.  They advised that with higher support, possibly over her shoulders, we might get slightly more time before needing to operate.  We are hopeful that this might be the case!

She loves the bear!

Stethoscope image: jscreationzs /


  1. Hey Lou. Glad they finally got back to you! Will it be another brace or did they want to try the cast again?

  2. Oh I'm glad you got some extra specialist opinions. The thought of really getting answers is just so exciting. I really hope this new suggestion will help. Well done both of you for being so patient - I can just imagine going with one of my kids and them howling the whole time! Xxx

  3. Love my little girl with her bear. Love Dad xox