And now they deny responsibility. These anonymous cowards disgust me, the doctors and the administrators who act so piously took two years to do what they knew all along they had to do.
Two years!
I want somebody to admit those two years, those despicable, cowardly two years that killed my darling boy who was so bright, so alive, so terribly unique as a human being.
Can you imagine if the sixty haemophiliacs who have died had been the sons of the doctors, politicians and bureaucrats who made this decision not to stop gays giving blood and to introduce AHF? Do you think they would have acted in the way they have and swept the whole thing under the carpet?
* * *
I spent my life knowing I had a very special child, though one who would suffer abnormal pain from the day he was born. There were complications as I went into labour. “Nothing,” the gynaecologist assured me, “too unusual.” My baby hadn’t turned around fully and he seemed to think the baby (we didn’t know the sex, but we hoped for a girl) would turn at the moment of birth. But that didn’t happen and Damon’s birth was very prolonged and, at one stage, they were forced to use forceps to deliver him.
Damon was born with bad bruising all along his back, big, ugly purple blotches which made me cry. This bruising surprised the doctor as it couldn’t have been from the forceps – the bruises were too well progressed and the ones caused by the forceps would appear some days later. Obviously the bruising wasn’t from any part of the birth process.
Damon seemed very pale and so they decided that he needed a blood transfusion, the first of over two and a half thousand he would undergo in his lifetime. This was a fortunate decision as this first blood saved my baby’s life and we had cause, from the very beginning, to be grateful to some anonymous donor.
Brett and Adam had been such easy births. Bryce would say rather crudely that they’d popped out like a wet pumpkin pip squeezed between thumb and forefinger. I was very upset that they took Damon from me for the first four days. I missed holding him terribly. God gave me a rapturous fecundity and ample breasts and I’d been expressing for days before the birth and had loads of milk ready to make him the strong, quiet, contented baby the others had been.
When I was allowed up to see him, he was in a humidi-crib with a horrific looking tube in his skull where they were feeding him with an intravenous drip. My breasts ached to feed him. He seemed so perfect, so utterly mine and I wanted my baby on my breast where all my other children had grown so strong and well.
Though I have to add that we weren’t unduly worried; Crown Street Hospital was considered one of the best pre- and post-natal hospitals in the world and our gynaecologist was quick to assure us that bruising at birth wasn’t unusual, that it had probably happened when the baby was coming through the birth canal.
Which was, of course, nonsense; but at the time it seemed like an adequate explanation. We didn’t know then that a bruise of this hue was at least two days old. I felt completely secure that I was in good hands, knowing that if anything was going to go wrong this was the place I wanted to be.
After eight days we were allowed to bring him home. I remember he had a tiny bandage on his finger. Not a plaster, a bandage. I asked why this was and the sister had laughed, “We took a blood sample. It’s routine, but he seemed to bleed a bit. Take it off when you get home.” It seemed so silly, cute almost, a neat little bandage on his tiny finger, the bow tying it bigger than his hand. At home Bryce removed it and a drop of blood grew suddenly on the point of the finger. We thought little of it and Bryce wiped it away and put a little pressure on the finger and it stopped after a while.
Damon was home at last and it was all we wanted, our third little boy with his birth bruising now almost faded. He was still a little pale and seemed a very quiet baby, though he was gaining weight rapidly and seemed happy enough. He seldom cried and seemed to sleep a lot. Brett and Adam would stand beside the cot while he slept and they’d prod him lightly or stroke his tiny hand. Sometimes I’d find Adam with his cheek against his baby brother’s, as though Damon were a teddy bear and Adam was taking comfort from the feel of him.
The two brothers would always remain very close and, just before Damon died, Adam held him and put his cheek against his own and wept. “It’s nothing, Adam,” Damon whispered. “Don’t cry.”
The incident concerning Damon’s circumcision has already been told by Bryce, though I’m still not sure whether it was simply a fortuitous circumstance that we rushed home or Bryce’s prescience. I’m not even sure he was not drunk, though I don’t think so. Bryce can be a bit strange sometimes when the African part of him makes its presence felt. Not voodoo strange or anything like that, but he can get pretty deep into himself and sometimes claims he can see things. Maybe it’s just another part of his famous dad facts?
All I remember was that Damon was taken from Crown Street, where we’d taken him on the night of his circumcision bleed, and transferred to the Children’s Hospital at Camperdown where Sir Seymour Plutta, who became known to us all as Splutter Grunt, was in charge.
Damon remained in hospital for two weeks, during which time we were told nothing. Christmas was approaching and I can remember how difficult it was coping with Brett and Adam’s excitement at the advent of Christmas with my baby in hospital. It was during this period that I started to worry that Damon was a haemophiliac.
We’d visit the hospital every day where my tiny baby lay with no nappy on, his penis covered in bits of gauze through which the blood had leaked and dried. Sir Splutter Grunt had instructed that his legs be tied in the open position to either side of his crib so that they wouldn’t rub the place on his tiny little penis where the circumcision had been.
I looked at him with his legs tied and the bloody gauze strips on his tummy and I wanted to cry. It looked exactly as though he was being tortured in some mediaeval torture chamber. It was horrible and I couldn’t understand why the wound didn’t seem to heal. After a few days I really began to worry. They’d change the gauze twice a day and soon fresh blood would seep through to the outside surface.
Not that I knew much about it, but my family two generations back had come from Russia and I’d been intrigued by this all my life. When Damon was declared a haemophiliac I immediately identified with the Russian Tsar Nicholas and his wife, Alexandra, whose son had been a haemophiliac.
I knew that haemophilia was carried by the female and was passed on only to males, though that’s about all I did know. Where I’d learned this I don’t recall. Now I began to think that Damon might also be a haemophiliac and that I might have given it to him, I might be a carrier.
I kept this thought to myself at first but finally confided in Bryce mentioning the Russian tsar’s son. I recall he heaped a fair amount of scorn on the idea. He knew that I was inordinately proud of my Russian ancestry and prone to flights of fancy in this regard. “Christ, the story your nana told me was of her mother fleeing a pogrom and walking across Russia and most of Europe with a large frypan on her back and precious little else! Thank God for the frypan, but it hardly suggests you were Russian royalty, does it?”
Bryce loved my nana’s fried fish which she prepared every Friday in the large and ancient frying pan which she claimed was the same one her mother had carted on foot across Russia, when she was fleeing from Jewish persecution. “If this thing, this haemo…whatever, is hereditary, carried by the female and passed on to the male, then if it was in your mother’s family, Victor would have been a haemophiliac, or in your dad’s family, then he would have been one. How do you explain that?”
Bryce can be annoyingly logical at times. Victor was my younger brother. But by far the most compelling argument was when Bryce asked flatly why Brett or Adam were not haemophiliacs. “How the hell could you be a carrier with two healthy sons?” I derived some comfort from this, although I’m not sure, logic or not, that I was entirely convinced.
Damon came home the day before Christmas and, while I’d been lactating a lot
and my breasts were very sore from carrying milk I couldn’t use and couldn’t totally get rid of, it wasn’t too late to put him back on the breast. He was the best Christmas present I could have had. Damon with the sticky-up hair seemed none the worse for wear. In a remarkably short time, he put on the weight he’d lost in hospital and seemed the most contented baby in the world.
In early January we received a call from the Children’s Hospital and an appointment was made for us to see Sir Splutter Grunt. By this time Damon was back to normal, eating well, sleeping through the night and not waking for a three o’clock feed and his skin was rosy pink with no sign of any bruising. The fears I’d had earlier were almost completely dispelled.
The interview with the head of the Children’s Hospital has been told elsewhere in this book, but I still grow angry when I think of the exchange between this pompous and patronising little man and myself. He seemed to be toying with us and when I asked him, “Is he a haemophiliac, doctor,” the surprise on his face was almost comic.
“How did you know?” he asked, obviously amazed that a lay person would even know how to pronounce the word.
Angry, I asked him when they’d discovered Damon’s haemophilia. “Oh,” he said casually, “we’ve known for a while now but I didn’t want to spoil your Christmas by telling you earlier.”
He then went on to explain entirely insensitively that Damon, if he lived, would not do so to an advanced age. “Your child won’t make old bones, arthritis will get him,” was the way I seem to remember he put it.
This most senior doctor in the Children’s Hospital seemed quite oblivious to my shock at this news. What this cranky old man was really saying, was that my youngest child was a sufficiently interesting medical specimen to merit his superior attention and how fortunate this was for us.
I recall breaking down and weeping in the car going home. This was as much from anger, humiliation and hatred for this horrible little man as it was from the knowledge that all was not well with my beautiful, chubby, breast-fed, little baby.
We did have some nice doctors. Dr Robertson, who was the paediatric specialist in charge of Damon as a child up to the age of about ten or eleven, was a very conservative man, but not a bad one. As it transpired he also made several unfortunate medical judgments, the knee calliper being one of them, resisting home transfusion another; but I do believe he cared a great deal for Damon’s welfare.
I remember when we decided that Damon must transfer to the Haemophilia Centre at the neighbouring Prince Alfred Hospital. They had built a specialist haemophilia unit and the facilities were vastly superior to the Children’s Hospital. Robertson had been very upset. Damon was his patient and, as a classic haemophiliac, a special one and he belonged to the Children’s Hospital and not to the institution up the road. The two institutions disliked each other and I don’t think Damon’s ultimate welfare came into it at all.
Damon’s purple head was another instance where the imperious medical attitude overruled any consideration for his parents. Bryce was allowed to visit Damon but I was forbidden to do so. Today such an idea would be preposterous but, at that time, Sir Splutter Grunt and his cohorts, probably Robertson as well, simply decided that as a woman I wasn’t up to seeing my child in such a distressing situation. They didn’t ask me, they told Bryce! They told him that his wife was forbidden to see her baby. Can you imagine how that hurt me? How awful it was to be denied access to my child because they thought I’d panic at the sight of him? How bloody presumptuous!
I am still angry about that. It’s all a part of the anger which I don’t believe I will ever overcome. The anger that started so early with Damon and still lasts after he is dead.
We are supposed to forgive, but I’m not a Christian. I can’t commend Damon’s life to God and walk away and forgive everyone. Somebody should pay, somebody should be brought to account or it will all be repeated again and again.
Bryce has tried repeatedly to build me into this book, to show my part and to have readers hear my voice; but it hasn’t been easy and, if he hasn’t totally succeeded, that’s largely my fault. Perhaps years from now if I ever grow less angry, less sorrowful and I am able to distance myself from Damon’s life, I may be able to recall the sort of detail a book like this requires. But I can’t now. It’s a blur, everything is a blur. I can’t remember the simplest things, the nicest memories of his childhood. The wonderful little boy he was. It’s all blurred.
Bryce says it’s the anger, I must get it out of my system. But how do you do that? He feels by talking it out to him in this book my anger might be lessened, I may be able to come to terms with it. But he doesn’t understand, even though I’ve told him on so many occasions – when a mother has a child who needs to be cared for right up to his teenage years, a child who is never quite well, never entirely out of danger, you can’t remember anything. It’s like pain, or childbirth: you have to expunge it from your mind, you have to erase memories, otherwise they become unbearable. I can’t remember – the nice parts and the horrible parts are all jumbled up. Damon’s horrible death has made everything one, long, incomprehensible nightmare.
Sometimes you remember bits and pieces and they all hurt, like the small room off a corrugated iron workshop at Prince Alfred, where they’d hang the prosthetic limbs and callipers with deformed boots attached to them, and you’d wait for your little boy to be fitted. I remember the smell of the new leather and the sudden, sharp, burning light of a welding torch in the workshop where they were making the substitute limbs for broken, hurting, malformed people.
I remember, also, the swimming pool where Damon would have to swim. The water was tepid, smelled sharply of chlorine and Dettol and was a dirty green, almost khaki colour. A nurse once explained that it had to be so highly chlorinated because old people often became incontinent in the warm water. The pool was made of concrete with no tiles and the paint had peeled off in great black patches, which Damon used to refer to as maps of the world, always trying to find one which resembled the shape of Australia.
People, old people with arms and legs missing, would be pumping up and down on kick-boards, gasping like porpoises. They’d get out by pulling themselves clumsily up on to the edge or being hoisted out on a sort of sling and hoist arrangement, some of them being no more than pink and bluish-white torsos. It was like a scene from Lourdes, all stumps and pink flesh and scar tissue and my darling child had to swim up and down for an hour, three times a week, in this human soup. We’d sit for hours in a large fibro shed, a temporary shed that had stood ever since the war. It had a corrugated iron roof and it was unbelievably hot in the summer and we’d sit waiting, Damon and I and dozens of cripples and amputees and kids who’d been maimed in car accidents or in a fire.
I remember the coffee and tea machines. The slots for the paper cups were sticky with coffee powder or melted sugar and the whole contraption was disgusting. But it fascinated Damon, so I’d be forced to have four or five repulsive cups of tea with powdered milk just to keep him amused.
A string of doctors in white coats would come around and handle Damon like a medical specimen. The rheu-matologist, the haematologist, the orthopaedic doctor, the physiotherapist and an assortment of interns and unknowns, gawping and prodding at his bruises.
Once a middle-aged doctor, whom we’d not seen before, came over and started examining Damon without a word to us, carefully checking his bruises. Finally he stood up and faced me, his expression tight-lipped. “Are you this child’s mother?” he asked. I nodded my head. “I have every reason to believe that this child has been physically abused!” he said. I just knew the various doctors had very little idea of what to do about his bleeds or his mangled knee or his haemophilia. They hardly said anything which was in the least enlightening or useful and they almost always ended an examination by patting Damon’s iron calliper. “You’ll need this a little longer,” they’d say sagely.
It was a litany, a medical mumble, when they didn’t know what to do or say but need
ed a conclusion to their pathetic examination. “You’ll need this a little longer” was like an exit line in some macabre stage play. The horrible calliper, which was causing the problem with his knee all the time, which should never have been placed on his leg in the first place, became the point of reference for all of them, the only thing they could think to grab onto before making their escape to the next grotesquery.
I’m sorry if that sounds harsh but that’s how I felt; the doctors needed the callipers more than Damon did! When we’d arrive for this awful ritual Damon would look up at me and laugh. “You’ll need this a little longer,” he’d say, patting his calliper as we made our way to the chairs against the wall.
These are the memories that come first, not the nice ones, not the wonderful, cuddly ones, the powdered baby bottoms, the delightful first steps, baby skin that smelled of caramel, the tiny, perfect fingers and toes, none of these. My mind is filled with purple and yellow and green bruises and callipers and needles, thousands and thousands of syringes and needles and bandages and bottles and pills and tubes, all of them piled on top of each other like a mountain of assorted garbage, the detritus of my son’s short life.
Except for a brief period before he started to crawl I never saw Damon completely whole. He was always covered in bruises in various stages of maturity, dark purple, green and yellow bruises, often in the most unexpected places.
Even Damon’s first steps were fraught with anxiety. We’d hope he wouldn’t get a bleed when he was just learning to toddle. My heart would be in my mouth every time he stretched his hands out and ran towards me in that wonderful, off-balance way toddlers affect, knowing they are about to be swept up in your arms and covered in kisses.
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