Bloods were taken from both of us in 2002 and sent away for testing. They both came back as the same gene that produces Crouzons, so even though we were not typical, we go under the name of Crouzons.
At the age of 32, and a professional with three degrees, I thought looking after a baby would not be too difficult. Little did I know. I had had no experience with babies so really knew nothing except for what I read in books and I learnt about the prenatal classes.
I had the difficult baby first. Melissa cried a lot and had a lot of trouble breastfeeding. I tried my best. I did not know how to stop her from crying. I would do everything that was written in the baby books and she would still be crying. This stressed and depressed me and I often cried when she did.
A clinic nurse came to visit me at home and she found that Melissa was not gaining enough weight and I told her of my problems. I went to the baby clinic for a day and it was discovered that Melissa was not sucking deeply enough to get the hind milk and therefore I was not producing enough milk to satisfy her. So she was supplemented with formula. After 6 weeks my patience had worn out and we put her just on formula. Once the feeding issues were sorted Melissa slept and was happy, and I settled down and began enjoying her.
When she was 3 months old I had to go back to work full-time. My husband became a house husband. I thought I would enjoy it but I hated it. I would miss a lot of Melissa's firsts and would get really angry when I found out what she had done during the day. In the end my husband stopped telling me what she was doing so I could see them for myself. Looking back I was still suffering from the post-natal depression.
At 6 months of age she had a CT scan.. Melissa had fused metopic, coronal and lamboid sutures. We had noticed that at about this time that she 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.
Melissa was 9 months old when she had this first operation called a posterior cranial vault expansion. The purpose being to make more room for the brain to grow.
Operation 1 - February 2002 - Posterior Cranial Vault Expansion
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 PICU 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 PICU. 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 PICU 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.
After this op, life continued on. We loved Melissa and so did her grandparents. We would take her out to the beach and to the park, enjoying all of her milestones. Her Gramps would love to play with her. He fed her her first bowl of chocolate ice-cream. Melissa would get lots of cuddles and kisses.
My wonderful dad passed away on New Years Day the following year (2003), before Melissa's next operation. With my dad's passing our life changed.
© 2012 by Jenny Woolsey
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