By about 12 months we noticed that the sagittal suture was nearly fused. Melissa would cry a lot and hold her head as if she had a headache, and her brain had started to grow out of the back of her skull where the doctors had left soft spots, like it did out through the top last time. We alerted the doctors to this and Melissa had another CT scan. This scan showed that her skull was too small for her brain again and that she had pressure on her brain. Holes had started to be worn in the skull from the pressure. She also had mild hydrocephalus (fluid on the brain).
When Melissa was 18 months old she underwent her second operation. This was a 'bi-frontal orbital advancement' where the doctors reshaped her asymmetrical forehead and advanced it. Her forehead was an odd shape due to the coronal and metopic sutures being fused from birth. If you look at her pre-op photo which was taken the day before her operation you can see that she has a receded forehead and the left hand side of her face is different to the right hand side. The doctors brought her forehead forward to be infront of her eyes. The left hand side of her forehead needed to be brought quite a way more forward to match the right hand side of her forehead. Melissa had a strabismus in her left eye which meant that her left eye was very off centre (you can see this in her pre- photos) and this operation helped bring the eye to face more to the front. You can see the difference in the two photos below. The operation took about 6 hours.
We had problems getting this operation done. After the neurosurgeon saw the CT scan he said that she needed the operation but he did not write it down in Melissa's chart or communicate it to anyone so it wasn't scheduled. When it was finally scheduled the operation was cancelled due to hospital strikes. The neurosurgeon told us that he was not operating. So it was re-scheduled only to be cancelled due to lack of an PICU bed. This was a real roller coaster ride. You psyche yourself up for an operation and then to have it continuously cancelled was very frustrating and stressful. We did not know what was going on in our little girl's skull and we were worried. I ended up writing to our state Premier (the leader of our state) to try to get some help. Finally the operation was done and afterwards the plastic surgeon said that the skull had holes worn in it from the pressure of the brain and that they should have done the operation sooner....
The operation was to consist of two parts. The plastic surgeon thought that he would first fix up the soft spots at the base of Melissa's skull where the brain was pushing its way out through by putting bone grafts over them. And then he would do the frontal orbital advancement. When the skin was peeled back a blood vessel in the dura (the membrane between the brain and skull) burst. We were told that it was in some scar tissue from the previous surgery. Melissa lost 3 times her blood volume. This part of the operation was cancelled and just the frontal orbital advancement done.
I cried again when Melissa had to go into theatre. We worried about complications. I again felt guilt and had to deal with seeing her in PICU again all swollen, with her head wrapped in a bandage, ventilated and tubes coming out of all orifices. We also had to deal with the fact that we could have lost her. That was scary but made her even more precious to us.
Melissa's eyes were swollen shut soon after the operation. She was in PICU for 24 hours and then went to the ward. Her swelling was more severe then in the first operation. One of her eye lids rolled under during the operation and became scabby and crusty. It took at least a month for the eye lid to turn itself back to where it should be as the swelling went down. Melissa was in hospital for 2 weeks.
The operation made a big difference to the top of Melissa's face.
© 2012 by Jenny Woolsey
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