(29/09/82 to 18/05/93)
from his best mate,
Graham Harrison (Father)
Life-support machines winked and beeped in the cardiac intensive care unit at the Children’s Hospital in Camperdown, Sydney, as I hunched over a bed, gazing numbly at the unconscious figure of my ten-year-old son, Ben. Naked except for a sheet covering his lower half, his body lay connected to a maze of tubes. A ten-centimetre-wide strip of plaster ran down his chest.
As I had already done countless times that night in early autumn, 1993, I vigorously massaged his hands and feet, trying to transfer some of my strength to him, willing him to keep going. Come Ben, you have to pull through, I thought. Yesterday my precious son had been healthy.
Now I struggled to comprehend he was battling for his life – and seemed to be losing. How could things have gone so wrong so quickly? I wondered.
Ben Stuart came into my life on September 29, 1982, in Sydney Adventist Hospital. As my wife, Elayne, and I joyously inspected our new baby, I counted my blessings. We owned a spacious house in a leafy Sydney suburb. I enjoyed a challenging job. We already had a beautiful, 18-month-old daughter, Kyla. Our three-kilo son, lustily bellowing at the bedside, was the perfect addition to our family.
An inkling of trouble came when a nurse placed Ben on a trolley and inserted a tube into his mouth to suck fluid from his throat, it did a U-turn and came back out. She frowned, and called the doctor.
An examination revealed that Ben was a TOF baby. “Your boy has a tracheo-oesophageal fistula,” the doctor explained. His oesophagus is joined to his windpipe.” Hour later, after Ben had been transferred to the Children’s Hospital, we waited while the upper portion of his oesophagus was surgically detached from his trachea, then stitched to the intact bottom half of the oesophagus. By 2 a.m., he was recovering.
Hugely relieved, we thanked God that our son had pulled through. Other families were not so blessed. In the next bed a couple lost their five-day-old daughter. Witnessing their anguish, Elayne and I vowed that if we ever were in a position to help, we would do what we could to alleviate others’ suffering – including donating each other’s organs.
Tests later revealed that a number of things in Ben’s development had misfired. He had an extra rib, his kidneys were joined by a common wall and his fifth vertebra was misshapen. The abnormalities were nothing to worry about, the doctors assured us, though Ben might eventually need surgery to prevent a sideways curvature of the spine. He should not play contact sport, or do anything that might hurt his back.
One evening three months later, I heard Elayne scream from Ben’s bedroom: “Graham! He’s not breathing!” I rushed in. Ben’s face was blue. I restarted his breathing with mouth-to-mouth and by the time we arrived at hospital, he was sleeping peacefully on Elayne’s shoulder.
A bronchoscopy showed that Ben had softer-than-normal cartilage round his trachea, causing it to narrow when he inhaled. Doctors decided to open his chest and suture his aorta, the main artery from the heart, to his breastbone. “This will take the pressure off the trachea, allowing the cartilage to strengthen as he grows,” the surgeon explained.
From then Ben was blissfully normal. As he grew, he became known to our neighbours as a free spirit for ever on the move. He routinely abandoned his homework to collect frogs’ spawn from our fishpond, swing from trees or play in bushland behind our home. Never once did his delicate back slow him down. One weekend, while helping out at a function at his school, I heard “Look Dad!” from behind me. Ben was balancing on the crossbar of the football posts three metres above the ground, wearing a gap-toothed grin.
Ben showed similar independence in most things. I once brought him a model-plane kit, hoping we could build it together. He refused to let me help, labouring over the model every night for two weeks. The completed jet was lopsided and encrusted with glue, but it was hard to tell who was proudest when we installed it on his bookshelf.
Noisy at home, Ben was often tongue-tied and shy around strangers. His most enduring mate, Calum Martin, lived round the corner. Calum’s dad found Ben sitting outside their house one Sunday morning. Ben had told him he had been waiting for his friend to emerge for more than an hour. “I didn’t like to wake anyone,” he explained.
As Ben approached his adolescent growth spurt, our orthopaedic specialist warned that he could experience problems with his back. Sure enough, in March 1993, x-rays revealed a noticeable curvature. If we don’t arrest it,” said the specialist, “he will have a server, progressive deformity.”
The operation would involve inserting a bone graft from one of Ben’s ribs into the vertebral column to stop his back from bending markedly to one side as he grew. Surgeons would gain access through his chest, opening the breast bone.
Elayne and I realised surgery was necessary but worried nevertheless. At night, when the kids were asleep, we discussed it, comforting ourselves with the thought that Ben had already survived two major operations without problems.
Ben seemed to accept the planned surgery as a challenge. Even when the orthopaedic surgeon explained that he would need to wear a plastic head-to-waist cast to keep his spine rigid for three months after the operation, Ben did not complain. Instead, he cheerfully donned the cast for a couple of hours each day to get used to it, then tried sleeping in it. He even wore it proudly to school, like a suit of armour.
Only later did I discover that Ben was secretly frightened. In a school exercise book, he had drawn an operating theatre and masked doctors with oversized syringes. He wrote: I wish I didn’t have to go to hospital.
On the day before the operation, I stood in our driveway as Elayne left for the Children’s Hospital with Ben in our station wagon. He was wearing a yellow cap and a new jumper, big enough to fit over his cast. He waved and yelled “Bye Dad.” The neighbourhood kids waved back as the car pulled away. (That was the last time I saw him awake).
The surgery was scheduled for 8 a.m. and Ben was not expected in the recovery ward until at least 11 a.m. After spending three apprehensive hours at work, I drove to the hospital to keep Elayne company. As I entered the waiting room, I sensed something was wrong. “There’s been a complication” Elayne said.
When the surgical team had attempted to move aside Ben’s aorta – sutured to his breastbone ten years before – a small hole opened up, spurting blood. A surgeon plugged it with his finger, but with no room to apply stitches, he tried to detach a fraction more. The hole began to tear, now requiring two fingers to stem the flow.
Technicians started a heart-lung machine to pump blood through Ben’s arteries and veins and “breathe” for him. But before it was fully operational, Ben’s blood pressure plunged, depriving his brain of oxygen for between eight to twelve minutes.
As Ben lay in intensive care, I forced back the despair and tried to think positively. Everything will be all right, I told myself. After all, Ben was an old hand at medical emergencies.
But the brain is the most fragile of organs. Starved of blood, the capillaries feeding it begin to break down. When blood flow is re-established, the weakened capillary walls begin to leak.
Now, as blood and fluid leaked into Ben’s brain, pressure in his skull built up. At 11 p.m., I urged Elayne to go home to get some rest for the next day. Kyla, safe with relatives, would also need her. Meanwhile, I tried to sleep in the parents’ hostel. At 1.30 a.m. the phone rang. The registrar, Dr Scott Ferguson, asked me to return to the ward. Ben must be coming round!
I hurried there, but the news was not good. The pressure in Ben’s head was increasing. Ferguson gave him drugs to contain it, and for a while his signs returned to near normal. Then the pressure crept up inevitably. At 3 a.m. Ferguson administered more drugs. By 5.30 a.m., I was still desperately rubbing Ben’s hands and massaging his feet. All I wanted was to hug him, to make him better. Why did I send Elayne home? I need her with me! At that moment, a social worker materialised. Like a guardian angel, she provided the support I needed. She said nothing, just put her arms round me as we cried together.
I was losing my son. I saw it in his eyes whenever the nurse cleaned them. There was nothing there – no sparkle, no life. It is not fair! My mind raged. I haven’t taken him bush-walking, or camping in the mountains, or all the other things a father plans with his son as he grows older.
At 6 a.m., Ferguson took me aside. He had done everything possible, he gently explained, but the gauges indicated that Ben’s brain was dying, although further tests would be needed to confirm this. I called Elayne. “Hurry, they say we’ve lost him.” We cried, then hung up.
Back in the ward, Medical technicians arrive at 9 a.m. to carry out an EEG. They placed a cap on his head, connected by a tangle of wires to a machine beside the bed. Of the ten gauges, only one moved to indicate brain activity and this very slightly. Despite my horror at the thought of losing him, I prayed for Ben to go in peace.
When another test later in the morning showed no blood circulating to Ben’s brain, the doctors took us into a small room. The medical technicians returned again to carryout a second EEG.
This time there was no movement recorded from any of the gauges. At 12.30 p.m., the doctor confirmed our greatest fear; “Mr and Mrs Harrison, I have to tell you officially your son is brain dead.”
Elayne and I were silent, drained. As we looked at each other, I thought back to the time when Ben was first in hospital. Even in my grief, I knew what I wanted to do, and Elayne seemed to read my mind. At the same moment, we said; “We want to donate Ben’s organs.” The doctors looked surprised. “We’re in such pain,” I explained. “If Ben’s organs can help alleviate someone else’s suffering, its the right thing to do.”
At 4.30 p.m., after an independent medical team performed further reflex tests to confirm Ben’s death, I signed papers allowing my son’s organs to be donated. Later, the Australian Red Cross transplant co-coordinator described the operation to remove Ben’s heart, lungs and kidneys, stating the transplant team would treat his body with the utmost of respect.
After spending the night in the hostel, waiting for the transplant team to assemble, Elayne and I accompanied Ben to surgery for the last time. Keeping pace with the trolley, I held his hand as a doctor pumped air into his lungs with a hand-held respirator, the only device keeping the rest of his organs alive. As he was pushed through the swinging doors, Elayne and I turned away.
For four hours, we walked in silence round the hospital grounds. Finally, a nurse escorted us to a “quiet room.” Ben lay on a bed, dressed in his green flannel pyjamas, his hair neatly combed.
I picked him up and sat with him on a sofa, where Elayne and I cradled our son in our arms. For an hour-and-half, we stroked his hair and talked to him for the last time.
On May 21, 200 people attended Ben’s funeral – family, friends, colleagues, neighbours, teachers, school mates. I am not a very religious person, but as I listened to a neighbour reading Ben’s eulogy, I was overcome by a strange sensation. Starting from my feet, a tingling slowly rose through my body, leaving me with a feeling of peace.
In August, I received a letter through the Australian Red Cross from a middle-aged man who suffered from severe kidney disease; “The wonderful gift your family has given me has opened the way to a new life that I value and hold precious every day…. There seems so little to offer for such a fantastic opportunity, but when all other words are swept away, only two remain forever – thank you.”
By the time I had finished reading, tears were running down my face. Here was living proof that Elayne and I had made the right decision.
Later that year, I received another letter, telling me that a young Melbourne girl’s life had been saved by Ben’s heart and lungs.
Post Script following the year’s after this story was published
In the year’s that have followed the publication of Ben’s Story, Elayne and I became heavily involved with; ACCORD, Donate Australia, Transplant Australia, and went on to meet David Ridoutt (Ben’s kidney Recipient), and finally Sharelife Australia – in an effort to motivate the public and change the medical approach to organ donation and transplantation management.
Eighteen years after Ben’s passing we have since had to farewell David who died in 2009.
We also continue to assist Sharelife Australia in overcoming bureaucratic hurdles that continue to impede the significant change required, to enable Australia to achieve world’s best practice so that we can achieve transplantation rates of 90 per million of population. As of 2012, Australia is slowly improving with a current rate of 44 transplants per million. If the community has the will, this target is achievable.
I have also become involved with a new dynamic donor family group called Donor Families Australia headed by Bruce McDowell. I would recommend all donor family members interested in communicating with other donor members and/or wishing to become more pro-active within the donor family area of organ donation and transplantation to register with us.