Life seemed very good, though I had a feeling of dread I just could not shake. It was not helped by the fact I still could not get up out of chairs and the bed without great difficulty. It was like something was holding me down, my legs just could not do it. I had to pull myself up and usually stay upright. My friend K visited regularly at weekends, she was at Wollongong Uni and looked forwards to time away. My GP was concerned that my blood pressure was still dangerously high so started me on antihypertensives. I breastfed until then but had trouble after that with C crying, not settling and generally seeming very hungry.
My mum was staying with us for a while to help and said that he was hungry. She encouraged me to try him on Carnation milk as a supplement over the weekend, until I could see the Baby Health Clinic in Clovelly. C definitely needed something apart from the breast as he downed the bottles of milk. I was concerned though about nutrition etc so asked the clinic about a formula and they recommended Lactogen.
Within days he was projectile vomiting, with terrible diarrhoea and screaming, going puce in the face and pulling his legs up to his tummy. The Clinic was no use at all so A, my nursing school friend, ran a test on his nappy and it came up positive for Lactogen Intolerance. On the same day I was with him at the GPs, a lovely English chap with two young children who had replaced David Bennett when he left. He heard C screaming and screaming and said this child is hungry. He went out to his back room and gave me six tins of Soy Milk and said try it straight away and phone him to let him know how he went. As soon as I got home I prepared the bottle and C never looked back. It smelled and tasted disgusting but it is what he wanted and needed. No more upset tummy or vomiting. Bliss.
Mum had returned home as her back was not good and the spare bed in our rented flat was shocking, an old wire spring one which sagged in the middle. She packed very quickly once I asked her if she wanted to leave, got a taxi at the end of our road, desperate to get home to the farm. It had been lovely having her but she always found it hard to be away from her home. She had loved finally meeting the neighbours who were very fond of C and had been a great help to me.
We caught the train and buses north to my parent’s beach house in Noraville once a month. We had a lot of fun at the beach there in Noraville, mum and dad met us there and had a great time with their first grandchild. My husband was a bit strange on one visit, dirty and dishevelled. He was washing up one day and I came behind him to help him dry up and he jackknifed back with his elbow, catching me on the bridge of the nose. I started laughing hysterically, as I tend to do when I am hurt or something is hurting me. I used the tea towel to stench the bleeding. He was very sorry and apologetic but said I should not have come up behind him like that. I iced my face and when mum and dad arrived laughed it off as an accident. Dad looked a bit perplexed though.
Other times we took him to the farm where we saw relatives and C was spoiled by his grandma and grandad. Mum got up with C and fed him to give me a rest and got up with him in the morning. She was in her element and always had been a natural with babies. My sister P also visited us there.
C had been born with swollen black eyes, due we thought to the traumatic birth. It took many weeks before the swelling went down and when it did his right eye was sticking out. We were a bit silly and as he had a Popeye doll we nicknamed him Popeye. After a week or so I became concerned though and took him up to the GP. He rang a friend of his, Dr Gregory Roberts, an eye surgeon in Bondi Junction who asked me to go up there immediately.
A really lovely chap, he diagnosed C with a Proptosis and said it was he believed Neurological, but suggested taking him to the Sydney Eye Hospital to be examined by experts. They saw him within a week, he was photographed for record purposes and I was told to get him into a Paediatric Neurologist ASAP.
I telephoned A and she said she would see what she could do at work and on the way home I stopped at Dr Ian Gregory Robert’s and he said he had suspected as much. He asked me into his office and told me his daughter had Hydrocephalus as a baby and he could not recommend Dr Heather Johnston at The Prince Of Wales Children’s Hospital highly enough. He phoned her immediately and she arranged to see C in Casualty straight away. I thanked Dr Gregory Roberts and caught a bus to Randwick to get C to Casualty.
I saw the senior nurse who worked with A as I walked in and she said she would go let A know we were there as she had been talking to all the specialists. We were called in to see Dr Johnston who said C needed a skull X-ray and a CT scan ASAP. These were done and about thirty minutes later I was called from the waiting room to see Dr Johnston. She said C had an asymmetrical brain. Slightly bigger on the right. The proptosis was also on the right. He had a larger eye socket on the right as well. She said the Radiographers disagreed however the Professor of Neurology and herself and their team over ruled and suggested the most likely condition was Neurofibromatosis. When I asked what that was the registrar with Dr Johnston asked me if I had seen the Elephant Man film. Dr Johnston glared at him for being so callous but the damage was done. I looked at my beautiful baby boy with horror and started shaking.
Dr Johnson arranged for us to be seen in a clinic soon and I took C in his stroller up to see A where she worked in Outpatients. She came up to me and said she had been selling her soul to Professor Wise who had agreed to see my baby boy ASAP. She said Dr Johnston was very good and that they worked together anyway. She seemed to be talking to me from a distance, I said I had to get home, no reason, I just had to go. She hugged me and said she would come around later. I walked back home, a forty minute walk but I needed to clear my mind. I just plodded on, not aware of anything really. Except sickening dread, and pain.
When I got home D was waiting for me, he said A had rung him and said I was in severe shock. I sat down and explained things to him, again and again. He could not take it in. I picked C up from his stroller and rocked him, wondering at his perfect little face, except for his eye sticking out grotesquely. And his bruising on his eyes.
After that C was measured, weighed and examined carefully at the clinic, we were examined for Cafe Au Lait spots, his father having several. He was very upset and embarrassed that the registrar got him to pull his pants down to check his buttocks for marks or growths. He also became very distant, quiet and cold.
During that awful week friends and C’s Aunt P visited as did Great Aunt Jean from Adelaide as it was the week before Christmas. Life seemed to go on. Even though on 23/12/84 it seemed to stop, for me anyway. The next day on Christmas Eve we attended the Midnight Service at St Andrew’s Cathedral in the city. There was a TV crew there and they zoomed in on the seemingly idyllic mother and infant, not knowing that the serenity they saw was being held in place by sheer willpower, so that I would not break down and cry.