Why Dr Gett was the only person allowed to transfuse Damon we were never quite able to understand. While he was a whiz with a butterfly needle, the process of putting a hypodermic needle into a vein is hardly a major medical procedure. Watching it three or four times a week it didn’t seem all that complicated and, apart from actually putting in the dreaded needle, to save time and the services of a nursing sister in the small hours of the morning, I did most of the procedure anyway.
Several opaque plastic bags about seven inches long and five across of yellowish-coloured cryoprecipitate, the name given in this form to Factor VIII, would be taken out of the hospital freezer and lowered into lukewarm water for fifteen or so minutes to thaw. Then it would be removed and gently hand-massaged until the Factor VIII was completely dissolved to make a viscous, mucus-coloured substance. This would then be drawn out of each of the bags with a syringe and added to a single bag attached to a dripline which was suspended on a hook above Damon’s head. When the bag of “cryo” and the dripline were in place it was time to use the butterfly needle. It had two small plastic wings fitted to the end of the needle which could be brought together by the forefinger and thumb so that the needle would be secure and at more or less the correct angle to enter a vein. From the end of the hollow butterfly needle ran a tiny, eight-inch plastic tube with its end designed to clip into the dripline. A tourniquet was wrapped around Damon’s upper arm and pumped until the veins in his arm “came up". The butterfly needle was then inserted, usually into a larger vein on the back of Damon’s hand almost at the junction of the wrist.
If the butterfly needle was correctly inserted, the blood would quickly shoot up the tiny tube which would then be attached to the dripline and the drip flow tap turned on. Drop by tiny drop, the Factor VIII would enter his veins until an hour or so later the plastic bag above his head containing the precious clotting factor was empty and it was time to go home. It would be some time after we arrived back home before the clotting factor would take full effect and begin to terminate the bleed and alleviate the pain sufficiently for Damon to fall into a fitful sleep. The whole round trip to hospital and back might take three hours and, often, another two or three more would pass before the pain subsided enough for Damon to sleep.
We soon grew accustomed to seeing the light grow steadily and Damon would recognise the various bird calls in the garden as each came to feed. We must have held the father and son world record for seeing the sun come up over Parsley Bay.
On bleed nights, I seldom got back to bed and would count myself fortunate if I managed to get two or three hours’ sleep prior to a bleed coming on. Most bleed nights merged into morning; often I’d just have Damon down and finally asleep when it would be time to wake Brett and Adam for breakfast. After we’d talked a while I’d shower and shave, make their school lunches and drop them at school on my way to work.
My advertising career was continuing to blossom, the trade press even referred to it sometimes as mercurial – and my social drinking with it. I was earning quite a reputation in the business, not all of it good. Where commonsense should have dictated that I come home early and hit the sack for a few hours sleep before the inevitable bleed occurred, instead I stayed out, telling myself I was only doing my job, not letting one thing disrupt the other. This was, of course, untrue. What I was doing was being unfair to my wife, decidedly sorry for myself and something of a coward, unable to face what waited for me back home.
Benita, who is a pretty feisty woman, didn’t take too kindly to my nocturnal working habits, when my elbow seemed to be doing most of the work. We began to quarrel. I knew it was my fault mostly, but in the nature of these things I was essentially male and stubborn and not a little stupid. The worse things grew at home the more I stayed away, so that I would often get home late to find Damon sitting in front of the television in his dressing gown, holding Blanky to his face, thumb in mouth and waiting for me to take him to hospital. His large hazel eyes would look at me, “Hello, Daddy. I’m sorry, I’ve got a bad bleed.” Of course, this made me feel even more guilty, with (Why are grown men so bloody stupid?) a resultant increase in my absolutely reprehensible behaviour.
But more of that later. The process of doing a transfusion wasn’t all that complicated. While it was a fairly tricky business getting a butterfly needle into a tiny vein, all this really seemed to need was a steady hand and I felt sure that doctors don’t have a monopoly on those. Besides, Dr Gett, mostly dog-tired and as short on sleep as I was, would often take two or three attempts to get the needle correctly placed. I was convinced that I could learn the whole procedure without much difficulty.
I had worked out that to do transfusions at home would make an enormous difference to Damon’s life and began to work for this to happen when Damon was only two years old. The longer a bleed continued the worse and more sustained the pain and the permanent damage to his joints. Most haemophiliacs are semi- or permanently crippled by their early thirties due to constant bleeding into the joints and the subsequent severe onset of arthritis this brings about. Home treatment would not only save Damon a great deal of immediate pain but it promised to delay the fusing (locking) of elbows, knees, wrists and ankles by several years. As far as I was concerned, the stakes were pretty high and I had to try to persuade the hospital to let me put in a deep freeze for the bags of cryoprecipitate and to allow me to do transfusions.
Benita and I went to see Sir Seymour Plutta (Sir Splutter Grunt) and attempted to explain our point of view. It was the first time I’d confronted him since the time I’d knocked him down, but when we entered his consulting room he looked up at me as though we’d never met before. “What is it you want,” he looked down at his pad, “…er, Mr Courtenay?”
I pointed out that I’d been through the entire transfusion procedure hundreds of times and, apart from putting the needle into the vein, it was simple enough. I felt sure I could be trained to use a needle in a matter of a few days.
“That’s an arrogant and preposterous suggestion! Your physician, Dr Gett, has been trained for nearly seven years. It’s a highly skilled task.” He looked up at us. “I’m not sure I’d attempt it myself.”
“I’m young, my hands are much steadier than yours, doctor.”
“No, no, I’m sorry, we simply cannot entertain the idea.”
“Why not, doctor?” Benita asked, speaking up for the first time.
“Precedent, we’d be setting a precedent, a most unfortunate one, too, I might add. Start that sort of nonsense and people will soon believe they don’t need the services of a qualified physician for all sorts of things!”
We looked at him, astonished, and I think Sir Splutter Grunt himself realised how reactionary this must have sounded, but he seemed unable to think of any other objection. Suddenly, his eyes lit up. “Teenagers! If they saw their parents using hypodermic needles in the kitchen they’d be encouraged to try heroin!”
Heroin was not exactly at epidemic levels on the streets of Sydney in the late sixties, even pot was a drug just beginning to be used by the so-called hippies. There could scarcely have been a teenager in Australia, except perhaps for the younger street prostitutes, who could have afforded hard drugs and the one most talked about at that time was LSD. This second reason was, if anything, more bizarre even than his first.
“Damon is just two years old, doctor. But we’re not the only haemophiliac family. How many haemophiliac parents do you think there are?” Benita asked, then replied herself, “We’ve contacted them all, there are fifty-six families, they all want to do their own home transfusion.”
“They all believe themselves capable of learning how to use a butterfly needle,” I added.
But Sir Splutter Grunt had closed down, he’d listened to us long enough. We already knew of his personal anger at the idea that we’d lobbied the families of other haemophiliacs, but now he was smart enough not to be drawn into a fight on two fronts.
“My dear Mr and Mrs Courtenay, your proposal is out of th
e question! It’s…it’s…quite unthinkable! I would have thought people of your intelligence would know better.” This last statement he said quietly, as though speaking to himself. Then he rose decisively from his chair and came around to where we were sitting. Gripping my arm just above the elbow with both his hands he practically tugged me upright and then proceeded to escort me to the door.
“You must please not ask me again, Mr Courtenay. I assure you, your son is getting the best possible treatment at this hospital. I don’t think you fully appreciate what we are doing for him. I simply cannot understand your attitude!” He was plainly upset and, I sensed, even a little hurt at our obvious lack of gratitude. Sir Splutter Grunt reached for the brass door knob and opened the door, allowing Benita to follow me out. “Good day to you!” he said, his voice as neatly clipped as his moustache.
“Goodbye, Sir Seymour,” we both said as he pushed the door shut with a great deal more haste than good manners dictated.
Benita is a woman who is not easily daunted and in the matter of her youngest son she was not about to give up. We tried to go over his head to the hospital board. However, the hospital system proved completely intransigent; no one but a fully qualified physician was entitled to place a needle into a patient’s vein, this despite the fact that most of the nurses and certainly all of the nursing sisters could have learned to do it with consummate ease, thus saving the institution a great deal of time and money.
What this arcane dictate meant was that Dr Gett, who lived even further from the hospital than we did, was the prisoner of Damon’s bleeds. In addition to insisting that the placing of a needle into a human vein was the sole prerogative of a doctor, Sir Splutter Grunt would not allow any other doctor but Gett to transfuse Damon.
When Gett was out of town, perhaps on vacation, a special doctor was appointed, but once Gett returned the old routine continued. Quite why this was so, was never explained. Dr Gett would often work a sixteen-hour day at the hospital and then receive a call from me at one or two a.m. to meet us at the Children’s Hospital in an hour. We kept this routine going for more than seven years but never once did he complain or even suggest that Damon was causing the slightest disruption to his life, though I do recall that sometimes I’d look into his smooth, unlined, Oriental face and wonder which of us was the more weary. The difference was that he was always sober and I, quite often, was not. Damon was having a marked effect on both of our lives.
Then in 1971, I had a short trip to the United States to attend an advertising workshop in Chicago and an interview with McCann Erickson for a big creative job in New York. While in New York, I visited the two hospitals which treated the greatest numbers of haemophiliac patients. To my horror I discovered that American haemophiliacs had either to pay for the blood they used in transfusions or supply it themselves from donations by family members and their friends.
I also discovered that, while the blood collected was processed in the hospital blood bank, it was returned to the home of the patient where it was kept in a normal deep freeze. Home transfusion was a reality in the United States and had been for some years. When a bleed occurred, the parents or, if he was a teenager or adult, the haemophiliac himself would administer the transfusion.
When I commented on this to a New York doctor at one of the hospitals he looked at me amazed, “For Chrissakes, the kids doing morph out on the streets don’t have any trouble working a blunt syringe. A butterfly needle is infinitely easier to use than a dirty hypodermic in a badly lit alley!”
I was so excited I phoned home to Australia that night. I remember it cost me seventy dollars, two days’ living expenses, so that I was forced for the next two days to stoke up at breakfast, which was part of the tariff at the cheap hotel I was staying at.
We had the answer we needed. I also had the job in New York. I was nearly on the way to being a really big-time ad man. But the one answer cancelled out the other. I worked out that if we moved to New York we weren’t entitled to join Blue Cross and I couldn’t possibly rely on new friends to become blood donors and it would cost in the region of thirty thousand dollars a year to buy sufficient blood to keep Damon alive. As a classic haemophiliac (a very rare grouping), he used almost fifteen times the blood product of a normal haemophiliac. Thirty thousand dollars in those days was a fortune; even the brightest young career on Madison Avenue couldn’t finance his sort of blood demand.
I shall be grateful to Damon for this outcome to my dying day. Being a big-time American ad executive is a doubtful ambition to say the least and, with my kind of tunnel vision, would have completely screwed up my life and the lives of my family with it. As it turned out, it was touch and go anyway. Raw ambition and a chronically ill child are not a good mix in either family life or in the corporate world. Long hours, hard drinking and the constant pressure of work in an ideas factory, coupled with a chronic lack of sleep and the stress of a haemophiliac child, make for an explosive mix.
I returned to Sydney from New York more determined than ever to do whatever it took to get permission to give my son blood transfusions in his own home. Needless to say, every fibre in the tiny body of Sir Splutter Grunt was opposed to this happening and so also was the hospital board. The fact that I carried testimonials from several New York physicians and affidavits attesting to the efficacy of the routine obtained from the parents and several American haemophiliacs themselves was irrelevant.
Sir Splutter Grunt, we were to learn, was the hospital board. The pompous old men of the old school tie brigade who nominated each other to this prestigious board would never dream of contradicting their very own medical knight of the realm.
One old guy, a member of the board, phoned us one night to ask me to stop bothering them. He made no attempt to understand our point of view and, as I recall it, his monologue went somewhat like this:
“Good God, old chap. How could they possibly go against the sensible wishes of a man who, upon the announcement in the New Year’s Honours List, next day booked passage by P&O steamer and travelled to England and thence to Buckingham Palace. A loyal subject who wanted to kneel before Her Majesty. Such are the old-fashioned values of Seymour Plutta that he wanted his knighthood from the lips of the Queen herself, with his commoner knees dutifully bent.”
Perhaps, in retrospect and because I’ve told the story so often, I have come to wildly exaggerate his amazingly pompous pronouncement, but I don’t know by how much.
Nevertheless, our egos were dented and our courage mostly spent. The medical profession, as usual, was having it completely its own way. By the meek and mild patient standards of the time, we were making an impossible bloody nuisance of ourselves; doctors and hospital boards didn’t expect to be badgered, nor did they take kindly to constant interruptions to their rubber stamp meetings.
But it didn’t help. We even recruited parents with similar problems to make the same request.
Eventually, by a statutory device some clerical ingrate in the system managed to dig up, the hospital board managed to invoke a state law which went back to the late nineteenth century making the placing of hypodermic needles directly in the veins of a human subject the sole prerogative of a qualified physician.
The bastards had us on toast! Now the very law of the land would need to be changed if ever we were to succeed in doing blood transfusions in our own homes. Hospital – 10. Patients – 0.
Dr Gett and I never spoke of my ambition to transfuse Damon’s bleeds at home. I accepted that he had no meaningful influence over the system, as much captive of its absurdity as we were, and I wanted to save him the embarrassment of a confrontation he could do nothing about and which could possibly compromise him. Doctors still were not expected to share confidences with their clients and Gett could not be seen to be too friendly, as this might have been regarded as a conspiracy by Sir Splutter Grunt’s people.
So we suffered mutually, while being forced to stand on opposite sides of the fence. The dark circles around Dr Gett’s dark almond eyes grew
more pronounced. After seven years, Damon was coming close to wearing us both out.
It was at about this time, when Damon was in junior school, that Sir Splutter Grunt and those who advised him decided to put a calliper on his left leg. This was done without consulting an orthopaedic specialist; we were just sent off to the hospital workshop to have him fitted.
What came back was a clumsy sort of black orthopaedic boot with metal rods inserted into the thick sole on either side and running halfway up both sides of the leg. Halfway up the thigh, a wide, stitched leather belt looped around the leg to hold the steel rods firmly. The knee was encased in a stitched leather cup, which was attached to the rods and buckled in the back. Thus, the leg could not, under any circumstances, be bent.
The reason for the calliper was Damon’s left knee. And it was the circumstances surrounding this knee which had perhaps allowed us to let Sir Splutter Grunt get away with the calliper without asking for a second opinion from an orthopaedic specialist.
Secretly, we felt terribly guilty about Damon’s left knee, damaged in an accident which should never have occurred and for which I blamed myself. We were building a swimming pool, mostly for Damon, as swimming was essential therapy to build up his body and keep his joints flexible. We’d gone pretty deeply into hock to afford it, as we’d not long previously purchased a rather rundown, though bigger, old home with an overgrown garden, the cottage having become too small for a growing family. The superstructure had been removed from the concrete pour on the Friday and I had persuaded the builder not to cover the pool so that we could all admire it. Our kids were old enough, anyway, not to be in any danger of falling into an empty swimming pool.
We decided to have lunch the next day beside the pool, to sort of get used to the grand life this suggested in our minds, when it would be finally tiled and filled with water so clear you would be able to see the Queen’s head on a five-cent coin resting on the bottom. The pool, I have to admit, was a big deal and we were all walking pretty tall around the place. Certainly, nobody in my family had ever owned a swimming pool, or even thought of owning a swimming pool. While Benita had rich relatives with private pools somewhere down in Melbourne, the only thing in the backyard of her parents’ semi-detached cottage was a bit of a lawn, a patch of big-leafed red-stemmed rhubarb, a compost heap of lawn clippings and kitchen peelings and a magnificent trellis of sweet peas, for which, every year, her old man grumblingly dug the three-foot ditch required – but only after an entire winter of persistent nagging from her diminutive nana.
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