Blog 6 - School: Year 5 - Pioneer Surgery

What doesn't break you, makes you stronger, right?

This surgery scared the heebie jeebies out of me though I put on a very brave front. This was a massive deal for a 9 year old girl.

Dr Emmett explained what he was going to do to me, step by step, using a real human skull. That in itself gave me more heebie jeebies. He had told me that it had come from India. That was a real alive human once and now it was his model. That skull will forever be imprinted in my mind.

All preparations were complete, the operation planned and the surgeons went to the University of Queensland to practise the operation beforehand.

The Queensland Craniofacial Clinic was launched with the surgery on a young boy called Robert Hoge. It was big news around the country. I have the clipping from the front page of The Australian.

This is Robert today.

  

I came next - no silver medal. Just the team's report in a medical journal that says that I was the first patient operated on in Queensland with Crouzon Syndrome. That's my claim to fame.

  

Me

In a marathon 10 hour operation the surgeons firstly cut my head open from ear to ear to access my face. They then advanced my top jaw 1.5 cm to approximate with my lower jaw and held it there with rib bone blocks. They also moved my eye sockets forward and held them forward with a bar of bone above and blocks of bone below. Hip and rib were used. The bone was crafted to shape and fixed in position by stainless steel wire. My jaws were wired together with tooth caps and splints. I had a tracheotomy so I could breathe.

My parents waited in the hospital pacing the floor...waiting, wondering. A lady from church came and held Mum's hand and prayed for me throughout the operation. My mum appreciated her gesture of kindess and support. It was a very long wait.

Of course with all operations there are risks. You are always told the risks before surgery and usually cringe at the long list. You also hope and pray that complications don't happen and that there will be a perfect outcome. But no, that was not the case for me.

What Went Wrong?
In ICU the surgeons noticed that my left eye was more swollen and prominent then my right eye. They thought that maybe there was a misplaced block of bone in the eye socket so they took me back into theatre again to have a look. But no there wasn't...my left eye just had a massive amount of swelling. The severe swelling led to damage of my optic nerve and very low vision resulted. I am legally blind in that eye. Muscular stretching around that eye also was put down to having happened in the operation. Nothing could be done to correct these.

Dr Spiro had been correct in his earlier warning.

With these complications my parents questioned themselves as to whether they had made the right decision but you can't go back in time. What was done, was done. You can only move on.

Memories
I have vivid memories of my stay in the hospital and the operation. I remember:

• crying and feeling all alone on the first day after Mum and Dad left. I didn't like being in hospital all on my own. It was really scary.
• being in a bed that was like a big kid's cot which I couldn't get out of. Rows of them in one big room.
• being given lots of new books and colouring pencils to keep me busy in bed.
• going to the hospital school before the operation - it was a wonderful novelty.

• after the operation being in ICU and not being able to talk or see. My eyes were bandaged and my jaws were wired together.  I would try to write on a notepad or point if I wanted something.
• my Dad's transistor radio kept the loneliness away. When I hear the songs of the day  particularly 'Leo' and 'Video Killed the Radio Star' I am taken back to that bed.
• my Dad reading Magpie Island by Colin Thiele to me.
• the painful physio I had on my chest, painful because I had just had ribs cut out.

• back in the ward re-learning how to walk. I had lost the ability from being in bed for so long.
• having all my meals as a soup as my jaws were wired shut. 
• not having any hair as it was shaved off and the nurses trying to make me wear one of Robert's beanies which I didn't want to wear. I didn't want to wear anything - I didn't care that I had an ear to ear scar across my head. But I guess others didn't want to see it so Mum bought me some beautiful silk scarves to wear. And once we got out of hospital Mum bought me a wig to wear.
• having my friend Anne from school come and visit me. Also seeing my cousins. My cousins brought me an Ekka bag as it was Ekka time and one of the nurses brought me a scally wag doll.
• receiving letters from my classmates.
• being given a picture of Jesus by one of the nuns (which I still have).
• handing out lollies to all the patients in the ward but not initially being able to eat them myself.
• the hospital throwing me a surprise 10th birthday party in the ward but because I could not eat any of it, I sulked on my bed.
• having the splints taken off my teeth (which I still have) which was painful as I was only lighted sedated.
• finally going home.

At school wearing my wig, still with swollen eyes

 A year later

After I went home life continued. I became shy and did not want to go out. I did not want to go back to Brownies or school but my mum pushed me.

Kids wearing wigs would have been a very uncommon sight in the 1970s. And uncommon sights meant more teasing.

And of course that's what happened to me. I had just gone through all the trauma of the operation and then was subjected to more bullying once I got back to school. One strong memory was at the school swimming carnival. I was swimming in a race so I had to take the wig off to put on my cap. Afterwards I was coming out of the toilet block and was readjusting the wig, and a girl saw me and brought all her friends to tease me about it. I said I wasn't wearing a wig and my friends told them to go away. I was kicking myself for readjusting it outside of the change room.

I also have a memory of the boys in my class saying that I was wearing a wig and I kept on denying it - guess I desperately wanted it to be my own hair...Then when I finally took the wig off when my hair had grown a little, they knew they were right..but I still wouldn't admit that I had worn a wig.

Looking at the school photo above, it was soooo obvious.

Once all the swelling came down my face looked great and I was happy. And of course my precious hair grew back.

On the Christmas holidays at a beach mission, I gave my life to Jesus.

Let all the little children come to me.....and I did.

© 2012 by Jenny Woolsey

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