We were told that there were two options available. The mid-face advancement, called a Lefort III, could be done using the RED (Rigid External Distraction using a halo) or by Internal Distraction (using screws which show above the ears). We had seen a child at the hospital with the internal distractors, and we had seen photos on the internet of the RED.
The plastic surgeon decided on the RED because from his research the RED allowed more precise movement of the bones in more than one direction (the bone can only go forwards with the internal distractors).
Luckily I had been on an internet support group and had heard of this surgery and knew basically what was involved and what we needed to prepare.
We bought clothes with buttons, a blender for mashing up food, a very small toothbrush, lots of toys, puzzles, craft supplies, dvds etc. It ended up being a very long 4 month process.
It was hard to explain to Melissa what would be happening because all we had was the Internet photo. We were going into an unknown world (this is the major reason why I made the youtube video - to help others going through the same process).
On the morning of the op Melissa had to be at the hospital by 7 am and was fasting. It was a long 6 hour wait until it was her turn. We saw children come and children go. The afternoon patients were coming in when Melissa was finally called. We found out that they had been waiting on a PICU bed to be freed up before doing the operation.
The operation took 4 hours and we saw her afterwards in PICU. The next day she went back to the ward and the process began. I have made a youtube video to explain what happened. Click on the link below:http://www.youtube.com/watch?v=GnP12pX1T9s
Melissa found the process very hard to deal with. She wanted the RED taken off, she cried from the pain associated with the stretching of the skin and muscles.
We became very worried about Melissa's state of mind as we could see her spiralling into severe depression.We took her to see the Child & Youth Mental Health Service at the hospital. Fortunately I had made contact with them before leaving hospital as she was very teary in hospital and because of her history of depression, I was concerned that it was beginning again. So they knew the situation and were very supportive.
I will always remember the doctor showing Melissa a deck of cards with pictures of teddies on them. Each of the teddybears had a face showing emotions. Melissa was asked to take out all the cards that showed how she felt. Every card she chose was sad...not one happy bear. My heart broke. The doctor worked with Melissa helping her to cope with her feelings and to get through the process.
Funnily enough she doesn't remember feeling depressed or seeing the doctor a CYMHS. Her mind seems to have blanked it out.
Once the RED came off we had a different girl living in our house! My husband and myself would catch ourselves staring at the 'new' Melissa. She too had to get used to her new face. The day she had the RED removed she told us that she wanted her old face back....she doesn't say that anymore.
In the months leading up to the operation Melissa was experiencing more social problems at school. She wanted to fit in and to be liked. As a result she made some poor choices and found herself on detention on a couple of occasions.
Soon after the operation a butterfly emerged. We noticed that Melissa started to hold her head up high, she pulled her hair back from her face, she become ambitious and self-confident. She would also stand up to her friends. Another plus was that she no longer needed her glasses or her cpap machine.
The surgery had been a major success. The plastic surgeon has since told us that Melissa has had one of his best results - thank you God.
© 2012 by Jenny Woolsey
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