Sickening Dread, And Pain

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.

We Went Home

When we arrived back in Sydney we stayed in a lovely bed and Breakfast in Edgecliff Road, Bondi Junction. My husband had stayed there when he first arrived in Australia. My friend K came around almost straight away and then my sister. We soon rented a flat in Randwick, to move in within the next few weeks. After that we excitedly hopped on a train up to my parents farm.

We were met at the station by my brother D and my cousin R and mum and dad. Dad was very happy and squeezed me really hard. Mum cried. After that we stayed for several days, catching up and introducing D to my aunt E and uncle P. Mum’s other brother and his wife were on holiday in the UK. Everything went very well except dad kept telling me off for leaving D out of things. Pot calling kettle black I thought!

I booked in to see my Professor at the Royal Women’s Hospital Paddington at the Ante Natal Clinic. He was a bit concerned about the Campylobactor and my blood pressure was a bit high so he booked me into the clinic weekly. Meantime I caught up with my friends, and D went out a lot with his Pentecostal church friends. We started going to an Anglican Church a short walk away. At the weekends we walked in Centennial Park, always the same route. Other weekends we caught the train up to the farm.

D started back at his old job with IBM though he was warned the job was only for six months as they were relocating to another area and would no longer need unskilled workers to enter data. It was becoming an increasingly highly skilled field to work in and I encouraged him to get some extra training, to no avail.

Mid August at my checkup I was told I had dangerously high blood pressure, Pre Eclampsia in fact. They let me go home to collect some things and told me to come in on Monday for bed rest. That weekend my parents made a very rare trip down to Sydney to see us and also my sister. Mum saw straight away what was going on, I had retained so much fluid that it was obvious to her. She was smiling and seemed okay with us but when we went over to my sisters with her she took my sister aside and was very worried.

I had bought myself a dressing gown from a shop in Bondi Junction on the Friday afternoon as I did not have a decent lightweight one to fit me, being eight months pregnant. D was furious with me for taking money out of the account. I had no money of my own and had to rely on money I saved from the housekeeping. He was very strict with the money. It was his, not ours and with the Pre Eclampsia I could not work.

Once I settled into the hospital I stayed stable, though the swelling became worse. D would visit me every evening after work and we would play scrabble with the board he had brought in. We also played cards. The other ladies were bemused as we were the only ones that played games. It was a good way to pass the time and did not require a lot of conversation.

There was a lovely lady across from me whose last baby had died in utero and had to be delivered. She was on bed rest for most of this pregnancy. My friend A from school who visited me every few days got on very well with everyone. She would chat to everyone and knew their medical histories and why they were there. I was so proud of her.

My parents never came down, they rang every evening and I started to get frustrated because I was supposed to be bright and cheery and keep mum on an even keel. But I was the patient! After about three weeks when they rang the lady opposite grabbed the phone and told them I was not very well and needed my parents support. Nothing changed.

One morning, after a very bad night the staff said my blood pressure was just too high. They arranged an enema and I was very dizzy and for some reason the liquid from the enema ran out all over the floor and I fell over, nobody noticed so I managed to get off the floor and I cleaned up the mess with a towel. Then I cleaned myself and rang my husband and A who arranged to come over after she finished her shift at POWCH. She was also a maternity nurse and had been involved in lots of births so I was happy she would be there as my support person. Especially since my husband was a little squeamish and not much involved in the antenatal care etc.

I was transferred down to the maternity delivery area and very quickly induced by my waters being broken with something I described as a knitting needle being shoved up my vagina. And I love knitting. In fact I was totally obsessed with knitting back then! A told later that it was more like a crochet hook!

All the nurses who worked with my friend, I had got to know very well over lunches in their staff room, had agreed with her that nothing would be happening as it was a first birth and was going to take a while. She did not make it in time because unfortunately when they put the drip in which causes the contractions I think someone must have sped it up by accident. It was going very fast. Within thirty minutes I had horrid backache. Was not dilated enough though so the nurses and Prof and Dr took off. It was an unusual day with a high volume of births. There were women in the corridors giving birth.

I had trouble with my bowels, poo came out repeatedly with contractions, my husband was horrified and kept going on about it. I was crying and saying it was happening again. And again. The lovely nurses reassured me it was fine and cleaned me up. An hour or so later our son was born. And almost strangled to death. The only help we had was early on. After I was given gas (which did not agree with me) and then an injection, the only person to help us was a young med student who had never witnessed a birth before. Luckily he was there and he managed to hold onto our son as my husband ran to get help.

They managed to get his cord from around his neck. It was very hard to hold for so long without pushing. His head was literally out and I had to stop pushing. Not sure how I did it but I was so exhausted that I could not grasp him afterward. I was dazed and very very dizzy. Nobody checked my blood pressure then. My sister arrived swiftly followed by A who was disappointed and concerned at how rapid the birth had been. Three and a half hours is too rapid for a first birth.

Meantime I was cleaned up and examined by a lovely male midwife, who said I had not torn but had deep deep scratches all the way down my vagina. He said they were going to sting, badly. He then became concerned that I could not void, so a catheter was inserted. I was then transferred down to a ward with other new mothers and within a few hours my parents had come down, very very excited. Their first grandchild. Dad was stunned that D was there for the delivery and he kept asking me if I was all right.

I had a few issues, mostly with trying to get out of chairs. My legs would not let me get up unless I held onto something to pull myself up so I mostly laid down or stood or walked.

After a few days we were discharged and we went home, on our first wedding anniversary.