Jenny's Story: My Life with Crouzon Syndrome
Growing Up with Crouzon Syndrome
Being an Adult with Crouzon Syndrome
Being a Mother with Crouzon Syndrome
Dealing with Unexpected Crouzon Syndrome
Helping Your Child to Cope with Teasing
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Jenny's Inspirational Sayings II
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Operation 1 - February 2002
Melissa was born with her metopic, coronal and lamboid sutures fused. We saw the plastic surgeon for an initial evaluation when she was a week old. When she was about 6 months old she had a CT scan. We had noticed that at about this time that Melissa would hold her head and cry a lot, as if she had a headache. The CT scan showed that she had pressure on her brain and that her skull was thinning from the pressure. It was decided that the first thing that needed doing was to open the lamboid sutures. This meant a 'cranial vault expansion' of the back of her head. The purpose of this was to give the brain more room to grow as by then there was pressure on the brain and it was growing out through the top of her head, through the sagittal suture. This operation was done at 9 months. In this operation the doctors took a section of bone from the top of Melissa's head from ear to ear. This bone was then repositioned into the back of her skull to make the back of it larger and rounder. Absorbable plates and bolts were used to join the front of the skull to the newly expanded back. The doctors left a soft spot at the base of the skull for expansion and for a place for her brain to grow out through if necessary. The operation took about 5 hours.
When Melissa went in to have this first operation I had to deal with this thing called Crouzon Syndrome. I realised very quickly that I had not dealt with it at all. I had pushed a lot of feelings and hurt down into the lower regions of my heart and a lot of them re-surfaced when I saw my baby lying in ICU with purple swollen eyes, a bandage wrapped around her head, being ventilated and tubes coming out of every orifice of her body. I had cried when Melissa went into theatre from the uncertainty of what was going to happen and I cried when I saw her in ICU. Her little body looking like someone had belted her with a baseball bat. Nothing prepares you for that. The plastic surgeon told us beforehand that she would have swelling of her eyes and face even though he was working on the top and back of her skull, but they were empty words until we saw her and the emotions took over.
All sorts of emotions bubbled to the surface, with the main one being guilt. I felt guilt because I had made a decision to bring this child into the world knowing that there was a 1 in 2 chance of her having the syndrome though I prayed and hoped before and while I was pregnant that she would not. I was the one with the gene. I gave her the gene though if I could have not I would not have. It was my fault.
And I had to watch my child, and still do watch my child, go through operations and pain because of me.
I had to deal with this and work through it and talk it out with my husband.
Watching your child go through craniofacial reconstructive surgery is very difficult and only those people who have done it, know how tough it is. I did not realise when my husband and I made the decision to try for children what the surgery/ies would entail or how they would affect me or the children. You can't possibly.
My father helped me a great deal. He held my hand and told me that I looked worse then Melissa did when I went through my operations. That in some type of crazy way helped. He gave me hugs and talked to me about my operations. I took comfort in knowing he had been there for me and was still there for me and Melissa.
Melissa was in ICU for 24 hours and then went back to the ward. Her eyes became swollen shut soon after the operation. When she was back in the ward I held her upright for a day and the next day she could open her eyes. The swelling had drained away. It was like a miracle. Melissa was in hospital for a week.
We did not take any photos of Melissa's first operation as we decided that we did not want her to see what she went through.
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Melissa pre-op |
 Melissa post-op |
