Mothering Rodney in 1971: An Autoethnography of the Life and Death of My Baby Born With Severe Congenital Heart Defects

Introduction

My three children died of unrelated causes in 1971, 1983, and 2005. I knew that writing was my salvation. Through writing and researching, I unravel my tragic motherhood experiences and put the pieces back together in a way that I am more comfortable with. I want my children to be remembered and to reestablish my identity as a mother.

I know, however much I write, I will never be truly at ease with my past. It is hard to fit into a world where my reality is made different by the burden of loss that I shoulder. Losing one child is unusual and I have lost three. I am wary in everyday social situations such as my exercise class; I wonder when someone will ask me how many children I have. Do they already know my story? (I’m aware of the strength of the grapevine in country areas). Do they avoid me because it’s all too hard? Do they sense something about me that keeps them at arm’s length? Maybe I don’t want to find myself in a vulnerable position. I certainly don’t want to sit around listening to women boasting about their extraordinary children. I would sometimes like to talk about mine but it’s all too shocking. My sadness and pining for my children is never far from the surface and that’s OK. I like to have them with me.

I hope that somehow my stories might strike a chord in some readers’ minds and resonate there in a helpful way. I had to write, and yet, I knew I needed guidance and a timetable. Finally enrolling in a Research Masters, I thought I would investigate my experiences through the lens of loss and grief for my thesis. I chose the method “autoethnography” as I realized that autoethnographers do what I dreamt of doing: They “highlight the relationship of their experiences and stories to the culture and cultural practices . . . ” (Holman Jones, Adams, & Ellis, 2013, p. 22). My initial supervisors lacked experience with this approach and I found myself meeting with a potential new supervisor, Dr. Yoni Luxford.

Having spoken to Yoni before and seen her around the campus, I appreciated her earthy wisdom and her common sense. I found her office in an old demountable building in a far corner of the university campus. I was nervous, as I did not want to “fail” this interview; I had a lot riding on Yoni agreeing to supervise my research. Yoni was welcoming. “Tell me about your project this far,” she said. I was conscious of my flat and monotonous voice, heavy with sorrow and pain as I told her about the deaths of my three children. I felt apologetic that I was, yet again, dumping my awful story onto another hapless victim. She eventually looked me in the eye and said, “Sue, you have been talking for 20 minutes and not once have you mentioned being a mother.” Surprise, terror, and the desire to run were my initial response to the “mother” word. For me, mothering was associated with guilt, angst, failure, and a bottomless pit of grief. Why would I go there? Then, at the same time, with some trepidation, possibilities surfaced in my mind. I could research life rather than death. I felt like I was on a roller coaster rising from the depths and now joyously lighter. There, in front of me, was a possibility of remembering my beautiful children alive. Yoni’s remark was the catalyst to a more holistic and truth-seeking story of my life with my children. We were on our way.

As a research strategy, I set up a memory box for each child. I had saved some of the children’s belongings through many house moves. Retrieved from the top shelf of the linen cupboard, these things looked like a collection of odds and ends, but to me they are tangible, evocative reminders of my children’s lives and have proved a powerful mechanism for reconnecting with my mother self. I was surprised by how much I enjoyed sitting on the floor of the study reading their stories, their school reports, and smiling at their naïve art. I wanted to tell the world I had spent a lovely day being with Toni and Derek but Rodney’s box contained only one item—a little blue cardboard baptism certificate. He had been hurriedly baptized on July 15, 1971, the day of his birth, delivering to us the unspoken message that something was seriously wrong with this baby. He lived for 14 weeks.

In 1971, I was 23 years old and my then husband, Bill, was 22. Rodney’s story would probably never have been told if the events of later years had not propelled me into a desperate need to reach what can only be called, a “new normal” (Terry, 2012, p. 355). I knew in my soul that writing was the only way to strengthen the tenuous hold I had on my sanity and besides, my children mattered. I could not speak about my dead children in the everyday world without facing the consequences of the listener’s embarrassment. I could, though, write them and myself into existence. To not speak or write was a denial of my motherhood, my children, and their importance in my life. I gave birth to three children. Toni, my first child, developed leukemia when she was 9. She died 4 years later in 1983 (see S. Middlewood, Luxford, & Crawford, 2016). Derek, my third child was a fit and healthy adult when he, a pilot, was killed in a light plane crash in 2005. My three children are dead. I am a childless mother.

Unlike most research projects where the findings are deciphered and then “written up,” my writing is my research—a means of finding out what I didn’t know. Using Richardson’s (2000) “writing as method,” I have written and rewritten striving to reach as close to the truth as possible. But this form of writing is more than a means to telling the “truth.” As Poulos (2013) suggests, it is a means of relating, of forming a relationship with the world and myself. Like him, my writing allows me to hope, knowing that though my voice may remain silent, my fingers continue to tap out the words and I am no longer alone.

Autoethnographers write about the personal. As Ellis (2004) describes, “they look through an ethnographic wide angle lens, focussing outward on social and cultural aspects of their personal experience; then they look inward, exposing a vulnerable self . . . ” (p. 37). Ellis, Adams, and Bochner (2011) state that autoethnographers should question, “who reads our work, how are they affected by it, and how does it keep a conversation going?” (p. 9). Damousi (2002) argues that writing the personal is often political:

The expression of . . . memories is often a political act; it invariably exposes the perpetuation of “states of injury” by individuals, governments, the state, and nations. To ignore the impact of such oppressions on psychic life is not only to deny the crucial role of “the personal” in driving progressive politics, but perhaps more significantly, to do so is to perpetuate the repression, silence and obliteration of traumatic memory, and those who experienced it, from our histories. (p. 112)

Rodney was born with severe congenital heart defects called transposition of the great vessels. He was born into the tail end of a period in Australia’s history marked by shame. Policies of the times included such callous acts as forcibly taking Aboriginal children away from their parents and placing them in institutions creating what is now known as the “Stolen Generations” (Human Rights and Equal Opportunity Commission, 1997). Unwed White mothers were hidden away and coerced into giving their illegitimate babies up for adoption (Damousi, 2002). Although neither Black nor unmarried, I found myself in a bewilderingly indifferent and heartless world. Giving birth to an imperfect baby meant I was actively discouraged from becoming attached to or even being with Rodney. No one said it but I knew, “they” believed he would die. Doctors, nurses, and midwives took over his custody excluding me from his care. I did not understand then, but I realize now that preventing me from bonding with Rodney was supposed to spare me grief. In the wisdom of the time, babies were believed replaceable. No one seemed to understand that these practices were extremely traumatic, creating immense suffering for mothers and their families.

The Process

Although I was guided toward collecting “data,” there were no photos of Rodney and no one from that time I could talk to about his life and death. There was so little for me to go on, except my memories, some riddled with so much angst that they were indelibly etched into my mind. Reading old scribbled journal entries from the past and writing in the present started an avalanche of memories sometimes all-consuming and harrowing.

In an effort to increase the objects in Rodney’s box in 2015, I visited the Births Deaths and Marriages Registry in Canberra where he was born. The desk clerk said apologetically that I could not have a birth certificate without first producing a death certificate. Because he died in a Sydney hospital, that application would have to be made through the New South Wales Registry. The Canberra desk clerk’s response hurled me back to scenes where Rodney was under the care of the “experts” and I was made mute by my powerlessness. Eventually, I obtained a death certificate in Sydney. A further year passed before I gathered the courage to return to the Canberra Registry armed with Rodney’s death certificate. Filling out yet another form, I left the space blank that asked for the reason for applying for the certificate. I thought there is not a simple word or phrase to describe why, no seemingly logical reason for applying for his birth certificate after all this time. My answer would involve a long description of how it was when your baby died in the 1970s. Thankfully, the clerk ignored that blank space.

It meant more than I imagined holding Rodney’s birth certificate in my hand. Tears filled my eyes as I read the details of his birth—material proof of his existence contained in a simple piece of paper.

Rodney’s Birth

On the day he was born, Rodney was sent from Canberra Hospital to Prince Henry Hospital in Sydney by plane. I was sent home. My family doctor visited me the following day. On this bitterly cold Canberra evening, the open fire, our only heating, refused to take, simply smoldering in the grate. Toni, then 16 months old, was lying in a bouncinette, in the kitchen, feeding herself from a bottle while Bill was trying to scratch together something for tea. Lying on a rug in front of the dying fire, I was miserable and exhausted. My breasts were filling, aching with milk for Rodney. The doctor took in this forlorn scene and said in a caring and compassionate voice, “I don’t think you should follow this baby to Sydney. Bonding with this child will only cause pain. Think, instead, of having another baby.” He seemed anxious to escape and left after a few more awkward minutes. I accepted his advice as “gospel.” He was the expert after all. What did I know? I tried to distance myself from Rodney. Then, within a couple of days, something primal stirred in me. Like a magnet, I was being drawn to Rodney’s side. I found myself alone on a bus traveling the 4-hr drive to Sydney.

I stayed with friends of my parents who didn’t know what to say to me. From their house, I intended catching a bus to the hospital, 4 km away.

At the bus stop, an image flashed into my mind. I was 16 years old, naïve and shy, in Sydney, visiting my sister. I was lost, and the bus had come to the end of the line. Rather than help me, a bus conductor with an English accent grabbed me and groped me. Terrified, I ran away.

Fear, heightened by loneliness and misery, wouldn’t let me climb the steps of any bus that morning.

I walked. No footpath, exhaust fumes, dust, and blinding sun. Although it was winter, it was unusually warm weather for Sydney.

Hot, thirsty, and tired, I found the babies’ ward. A nurse showed me to Rodney. I was shocked. I recognized him but I did not know him. This baby was tiny. Fragile with white translucent skin and he had the face of a wizened old man.

“Don’t touch him,” she said firmly, “He’s too fragile.”

She left me there, staring.

A moment later, a man in a white lab coat, unwrapped the swaddled Rodney. Ignoring the invisible me, he gashed Rodney’s tiny finger and drew blood leaving him screaming, distressed, and blue.

I stood staring. Mute.

Wasn’t he my baby? My flesh and blood? Did they own him now?

I stood staring.

I left. No one spoke to me.

Back home I lived in a daze, mechanically doing the basic things to keep the household going and caring for my toddler, Toni.

After a couple of weeks, Bill and I were summoned to the hospital to meet with the doctors: a surgeon and physician. Within minutes, the conflict between them was evident. The physician suggested that we do nothing. The surgeon said, “operate.” He offered us hope. I had no idea what “do nothing” meant and did not know what to ask. I could not imagine waiting for him to die, not knowing when that might be, all the time watching him struggle for every breath. I know now that “to do nothing” was a complex and caring response. What I needed was the physician to say, “we can help you care for this baby at home, alleviate his suffering and allow him to die a peaceful death.” Of course, this kind of care was not available in 1971. Perhaps, this is why I became a palliative care nurse in 1999. We also assumed that the doctors were morally decent human beings. Maybe they were. Could performing futile surgery to keep Rodney alive for as long as possible be justified? It was not until the mid-1980s that pediatric cardiac surgeons had the technology to successfully operate on a heart like Rodney’s (Marathe & Talwar, 2015). Such surgery in 1971 was inherently experimental.

Feeling like we had no choice, we followed the surgeon’s advice. He wanted to wait a few weeks. I was a nurse. I convinced them that I could care for Rodney at home until it was time for his surgery. I was desperate to snatch him from their hold and mother him. I knew I could do better than the hospital nursing staff because I would love him. We drove home to Canberra with our 4-week-old, fragile cargo in a bassinet on the back seat of the car.

Once home, I held him and mothered him. Even though we were away from the hospital, there was a sense that the doctors had relinquished him to a nurse (not a mother) charged with keeping him well for the doctors who still had part ownership. Bill set up monitors so that I could hear him cry from wherever I was in the house. When he cried, I rushed to him knowing that the exertion turned him a purplish blue. I hate to remember that I pushed Toni away from me with my foot one day when she was demanding attention while I was trying to sooth Rodney. But this was my first opportunity to absorb this little being, my son, into my heart. Rodney had been called by name from the first months of pregnancy. I knew, with a mother’s intuitive certainty, the sex of each of my three children and named them all before birth.

Rodney was named after a 2-year-old Aboriginal boy who I had cared for as a student nurse. He was brought in from the outback with a severely burnt bottom. This Rodney had been playing with fire and his shorts had caught alight. He lay on his tummy all day and night with a frame supporting the bedclothes, leaving his naked, red, raw bottom exposed to the air. Although he was confined to this little cave, he thoroughly enjoyed himself, he played, ate hearty meals, and was only ever heard to cry when his awful wound was attended. We all loved him.

Our Rodney was very different. Whereas Rodney with the burnt bottom was as black as ebony, my Rodney was so pale, his skin was almost translucent. He had huge blue eyes that saw right through me. I wondered how this wise old soul had turned up in my body and had been born so fragile. Gazing intensely at each other, it was as if we recognized the bond that unified us. A powerful need to protect and nurture Rodney was roused. It was as if he and I shared a secret knowledge.

Initially Rodney began to thrive at home. He put on a few ounces: He weighed only 5 pounds when born and weighed the same when he left hospital 4 weeks later. Then, as he grew, his heart was less able to cope with his body’s needs and he began to weaken. He was 12 weeks old when we took him back to Sydney’s Children Hospital and left him in the hands of the surgeon. Like a robot, I walked away, as cold as ice. Days later we returned, this time to the Neonatal Intensive Care Unit (NICU). As the three of us peered down into the glass humidicrib Toni, our 18-month-old daughter, perched on her father’s hip, let out a piercing howl. It was a sound of distress that I had never heard from her before. She screamed for all of us. We stood transfixed. Rodney’s eyes were enormous in his tiny white face. He was staring at me. He was terrified, in agony, pleading to be rescued from this torture. The incision down the middle of his skinny little chest was exposed. This image of him was to freeze in my mind’s eye like a perpetual snapshot. Overwhelmed, we had nothing to say, nothing to ask of the two young, male doctors who stood watching us. Frozen at the core and trying to control my rising hysteria, I just ran away.

Back home, days later, I answered the phone to the news that Rodney had died. I felt nothing. Not even relief. I was a detached witness as I watched this unchangeable scene acted out. In that moment, Rodney’s death held no significance to me. Bill was really upset. I was irritated with him, thinking, “What the hell did he expect?” I could not understand the tears—we knew he would die and now it was all over. Although Bill needed me, I couldn’t be with him.

Nine years later, I revisited the old building that was the NICU where Rodney had died. It had become a residence attached to the children’s hospital for country people. Toni and I stayed there while she was having radiotherapy for leukemia.

***

As I Write

As I write this, I am reading Colm Toibin’s (2012) novella The Testament of Mary. Written from Mary’s viewpoint, it is a story of Mary’s thoughts and deeds from the time of Lazarus’s rising from the dead to the death of her son, Jesus Christ. The narrative of her maternal experience as she watched her son’s crucifixion struck me to the core.

. . . he seemed to open his eyes and tried to speak . . . They were ways of letting us know that he was still alive, and, strangely, despite the pain he suffered, despite this vast public display of his defeat and the fact that I had all the time desperately wanted it to be over quickly, I did not want it to be over now. (Toibin, 2012, p. 82)

This poignant depiction of Mary’s experience understates the profoundness of the moment. It was as though Toibin had read my mind. Like the fictionalized Mary, I too “wanted it to be over quickly but didn’t want it to be over now.” Like Mary, I, too, left before he was dead. Mary convinced herself that she was running away to protect Mary Magdalene as both of their lives were in danger. I suspect that Mary and I ran away because as mothers, we could not stand by powerless to protect our tortured sons. The two Marys, in the story, later shared the same dream: They dreamt that they sat with Jesus’s porcelain body cradled in Mary’s arms as she and Mary Magdalene lovingly washed the blood from his wounds.

I would have loved to have dreamed that dream.

***

I had a different dream. It was around the middle weeks of my pregnancy with Rodney:

I was lying on the couch in our lounge room.

With one intense contraction, my body pushed Rodney into the world.

I yelled for Bill.

“Quickly, put him in the fish tank!” I insisted.

His big hands picked Rodney up and gently submerged him in the warm, salt water.

His tiny, red, translucent body floated, head down, unfurling a little in the top third of the fish tank. The fish swam about him unperturbed.

Rodney was happy. I knew by the way he was moving about in the water, sensually enjoying the space. I knew that this was no permanent solution and that he was doomed.

I awoke. Startled.

Bill kept a large tropical fish tank back then. It contained gouramis, as translucent as Rodney’s skin, joined together by their prolonged kisses. There were all seeing angelfish with flowing black robes and swiveling goggle eyes, schools of neons flashing their lights as they darted about, perpetually busy. The green plants flowed like mermaid’s tresses gently caressed by the aerating bubbles. It was the perfect environment for a baby who could not, efficiently circulate oxygen to his cells.

Within that dream moment as Rodney’s tiny body floats in the tank, I realize that he is blissful. He has the freedom of space within what is for him, paradise. Was this to be his single moment of joy?

The dream did not leave me. I knew, intuitively, before Rodney’s birth, that all was not well with him. The story of his life was already scripted. I knew, though I could not have put it into words, that the only course to take was to live through his birth and all the inherent problems his imperfect body would reveal and allow our lives together to unfold. There was nothing to be done. The dream cushioned me from the real events following his birth. I was unsurprised that his heart was the wrong way around with the aorta and the pulmonary vein back to front. I had been forewarned. My womb and the fish tank were the only safe places for him: neither more than a short-term solution.

My pregnancy with Toni had been uneventful. I felt healthy and fit but with Rodney I was uncomfortable, unhappy, and anxious. My attachment to him was different, complicated by a sense of unease and foreboding. The only “real” clue to anything being wrong was the doctor saying he was small for his gestational age.

It is odd that I don’t remember his actual birth. I do remember the pause in hubbub of the labor ward, when nothing was said. He was quickly put into a humidicrib because he was so small. It was not until half an hour later that the doctor revealed he had problems. I now know that it was unlikely, back then, that I would have held him after birth. I don’t even remember if he was shown to me. But I can still see his crib being trundled off by a faceless midwife. I wanted to follow. Apart from looking down on his tiny form during his Baptism, I did not see him again until I traveled to Sydney days later.

***

Writing, all these years later, I am aware of the dread that accompanies me when I think of Rodney. I remember little of mothering him. Trauma banished any feelings of love. Instead, I am flashed back to that scene in NICU with his big staring, terrified eyes and the incision down his tiny chest. The horror defeats me.

Taking heart from Toibin’s Mary and her attempts to remember and make sense of the events leading to her son’s brutal death, I delve deeper into my memories trying to remember the weeks prior to the surgery when we were together at home. In my journal I write,

I got used to you, Rodney, not realising that you were so odd. The shocked faces of people who peered into your pram when we were out walking startled me. You were tiny. Your big staring blue eyes revealed wisdom far greater than mine. That wisdom worried me. It was as though you could see through me, and knew better than me.

Holding you, yes, you were mine. We didn’t let on that we cared about the future we simply lived day to day. We did know though, both of us.

You and me; it’s time I gave up the mantle of memories of those scenes of torture and pain and allow love to flow between us. Can you love me or are you like me, so traumatised by the harrowing time you went through. What can we do? We both have to give up the pain in order to grow, allow ourselves to feel! “Loving,” what does it mean? I was fiercely possessive of you at home. Owned you, protected you. I hated giving you back to the hospital.

Here we are again, back with you and me, both of us helpless, in that NICU.

I ask for help. Supported by my therapist, I follow the sensations held in my body while I relive entering and staying in the NICU scene. An overwhelming heartache is broken open and sobs, silent screams, and floods of tears pour forth. There’s more I know, perhaps a bottomless pit but the heartache finally eases and now it is my breasts that are sore. I rock back and forth while, in my mind, I hold my Rodney and he suckles at my breast. I swap him from one side to the other until the soreness dissolves. When he is replete, he looks up and smiles a funny, crooked smile. I come back to the real world.

Exhausted, I enjoy the sunshine for the rest of the day and that night I hold Maria ¹ against my heart and sleep a deep satisfying sleep. In reality, I was not able to feed Rodney because he was taken away at birth and no one suggested keeping my breast milk flowing to feed him when he was in the nursery. He did smile. I had forgotten that.

***

Grief

It was after Rodney’s death that I watched myself sitting on the floor in the corner of the front room, inert, blankly staring into space, alone, unable to reach out. I felt trapped in solitary confinement, deprived of all sensory input. Although I was not locked into this cell, I could not escape. It was safe in here. I didn’t know that this was “grief.” I was confused, wasn’t Rodney’s death insignificant? I was expected and I expected to get over it, get on with my life and have another baby to replace him. No one said it would be like this! In fact, no one said much at all.

The priest who conducted Rodney’s funeral knocked on the door one day and asked me how I was. On the doorstep, I said “I am fine thank you” and he went away. Bill busied himself with work and I kept up appearances, continuing to say “I’m fine,” cooking meals and spending the evenings numbed out watching television. Neither of us could talk about it. There was nothing to say. Rodney had lived and died: end of story.

The solitary confinement cell is still there and I retreat to it sometimes although with my growing compassion for my young mother self I have less need to withdraw.

***

Body Parts in a Jar

My 32-year-old son, Derek, died in 2005 in a light plane crash, 34 years after Rodney’s death. His life and death are a story in their own right (see S. J. Middlewood, 2015) but it was his death that became the catalyst to researching what had happened to Rodney. One morning, just days after his death, I awoke all powerful.

I was so strong I could have lifted the rear of my car off the ground. I was superman (no, not superwoman, much stronger). I could see clearly, no obstacles, no doubting my ability or my perception. No rules, rationalizing arguments, or important people could stand in my way. No procrastinating. I presented a formidable challenge to anyone wanting to offer their condolences—this is not how a grieving mother is supposed to behave.

It was Rodney who was on my mind.

In the year 2000, I had heard a news item on the radio; body parts of people who had died in hospital being kept by pathologists at autopsy without the permission of loved ones. I had tucked this away in my mind but had not summoned the energy to follow this up.

Were bits of Rodney sitting in a jar on a shelf somewhere?

I can find out now. No one can stop me. Before it’s too late.

Derek is dead. All my children are dead. I have nothing more to lose. Nothing can hurt me more than I have already been hurt.

Pushing my way through the bureaucracy of New South Wales Health. Fill out forms. Get a witness. Wait. Phone. “They” had lost them. Fill out more forms. Find a witness. Wait.

No one filled out forms to take his bits. How dare they make me jump through hoops now?

Yes. A letter: “Human Tissue” from Rodney was located in a jar, on a shelf at the Prince of Wales Hospital.

My omnipotence was fleeting. Long enough to act but long gone by the time the letter arrived. It came on a bad day, I was in the depths of despair with Derek’s death and weighed down and crushed by the enormity of accumulated tragedy. John, my second husband, was at work unable to leave the pharmacy. I was wrong, thinking that nothing else could possibly hurt me now. Alone, I hid under the doona and howled. But I had underestimated John’s capacity to love and support me through this time. He helped me to act.

Within days, John and I were at the airport waiting to catch a plane to Sydney. Standing at the bottom of the steps to the plane stood two young men, clearly the pilot and the copilot. They were laughing and chatting together. One smiled as I headed up the stairs. I wanted to kick him in the shins. How dare he be alive in his smart uniform smiling when my pilot, my Derek was dead? My blubbery face was soggy with tears again. I didn’t care if we crashed—no big deal—an end to this interminable suffering.

We took a taxi to the Prince of Wales Hospital (I was going to make “them” pay our expenses). We were met in the foyer by a nurse, the “Quality and Clinical Risk Manager” for the hospital. She was so nice. It was such a relief; I had dreaded coming here. I was vacillating between thinly disguised rage and empty hollowness, a childless mother. I was suspicious. Were we being treated with kid gloves because we were seen as having a high risk of suing? Or, maybe now thoroughly decent people worked here? People who were trained to understand and help people like me. Toni had liked the nurses here when she endured 4 years of treatment for leukemia in the 1980s. I remembered the oncologist bringing in his new perfect baby to show him off to us. I shunned him, remembering Rodney. And, there was always all that tedious waiting, waiting, and more waiting.

I expected to wait. Instead, 22 years after Toni’s death, they could not do enough. I was confused by this attentive and sensitive treatment. Our host acknowledged the deaths of my three children and just as I was sinking again into despair, said, “what did you do, run over a Chinaman?” We laughed. The mood changed. She handed me a thick wad of medical notes, Rodney’s notes photocopied. I flipped through them. In print, Bill was listed as next of kin. Not me, the mother who had carried him for 9 months and given birth to him? It was a sign of the times, when women were legally subjugated to their husbands in all formal matters (Steedman, 1987). I immediately searched for evidence to confirm my suspicion that Rodney had not been given analgesics after his surgery—there was no medication for pain listed on his treatment sheets. How could anyone cut open the chest of a tiny baby and ignore the painful consequences of their act? Our nurse said she tried to get the pediatric cardiac surgeon to speak to us but hadn’t succeeded. She told us that it was not until the late 1980s that Rodney’s heart problem had any chance of being fixed. She went on being kind, taking care of me, helping me to understand.

She took us out to lunch in Centennial Park.

She took us to the morgue.

She prepared us for what we were about to see. On a square of blue Wettex, on a mortuary trolley were tiny pink pieces of human tissue—Rodney’s heart and lungs. I stifled a scream, stood staring for a moment, and left. I wanted to run. Our lovely nurse stood by us and without words I knew she was sharing our pain. She organized a taxi and accompanied us to a funeral director. The undertaker, a middle-aged, thickset man who gave the impression of having seen it all before, showed us a little box that could hold Rodney’s bits. It was a simple little wooden box that I associated with jewelry rather than body parts. We learned that we were not allowed to take Rodney’s bits home with us on the plane. Everything was so surreal; we did not even bother asking why.

Late afternoon, we thanked our compassionate nurse host and left for the airport. I was utterly wrung out and exhausted and yet content in the knowledge that I had finally taken action to right a horrific wrong. I’m so sorry Rodney, you didn’t see me standing up for you during your short life.

A Canberra funeral director received Rodney’s body bits a few days after our return. He and the cemetery staff helped us inter Rodney’s heart and lungs in his grave. Our friend, an Anglican priest, presided over the little ritual for our small huddle of mourners. Later, I had a memorial service for all three children and was determined that the truth of Rodney’s life and death was acknowledged.

***

I married my second husband, John, in 1991 after 7 years of being a single mother. I was telling my supervisor that he was the first person to ask me about Rodney. She suggested that he might like to contribute his impressions of what I said about the children when we met. This is what he wrote.

A Note From John in 2013

When I first got to know Sue, I became aware that besides her son, Derek, her eldest child, a daughter named Toni, had died of leukaemia about eight years before.

A little later I was told about her second child, a son named Rodney, who had been born with transposition of the great vessels and had lived for a little over three months.

Sue’s third child, Derek was 18 years old, built like a brick outhouse and very much alive and well.

I noticed that Sue rarely spoke about Rodney.

Derek was omnipresent in our lives and there were photographs of Toni around the place, but nothing to show that young Rodney had ever existed.

Rodney seemed to have been pushed to the background of Sue’s memory and rarely mentioned.

I discovered that his birthday was on 15th July, only 4 days from mine.

Following a rather messy divorce, I was missing my children so I told Sue I would “adopt” him and make sure that he was brought back to the family’s attention. Rodney was “mine” to look after and I made it my job to keep his memory alive.

It seemed to me that his short painful existence on this earth deserved acknowledgement.

The problem was that there were no mementoes. No photographs to hang on the wall, no soft toys or baby clothes.

The only things we had were Sue’s real memories of him and my what ifs?

Nowadays we make sure that we acknowledge his birthday each year, remember the date of his death and mention him, along with Toni and Derek at Christmas gatherings.

Sue told me once that he had red hair, so I figured that he would have been called Torchy, Blue or Bluey if he had survived.

I had an un-named 14ft sailing dingy which was coloured red and cream, so I had a sign writer put the name “Little Blue” on the hull to remind us of that little red-headed kid who, under different circumstances, might have been racketing around the place causing the kinds of havoc that red-headed kids do.

After Derek was killed in 2005 in a light plane crash, Sue began focusing on an uneasy feeling she had about Rodney for quite a few years. She thought that they might have removed his organs when they did the post mortem. There had been a big scandal in the early 2000s about unauthorised removal of organs in the past.

I went with Sue to the hospital where the hospital staff had arranged a viewing.

It was tragic to see his tiny heart, not much bigger than a postage stamp with a tiny square of tissue punched out of it, lying on a piece of blue cloth.

That is the only physical sight and actual memory I have of this little boy.

They were buried in his plot in Canberra cemetery where Toni is also buried and Derek is remembered.

***

John broke the “Rodney could not be talked about” rule that I had lived with for so long. Telling him my stories early in our relationship and living through Derek’s death together has been a blessing.

***

Making Sense: Attempting to Rationalize

The single most confounding matter of dealing with my time with Rodney was the assumption that his life and death was insignificant. Everyone acted as though it was merely a bump on the road of life and I would travel on unchanged. Initially when he died, I was cold, callous, and unfeeling. Days, weeks, and months later, I witnessed myself sitting on the floor in a corner of the room cocooning myself in a fetal position, wrapped up tightly, mindlessly rocking.

Back then, I didn’t even have the words to ask the question, Was there something wrong with me being so affected by something so seemingly insignificant? No one knew how I was. No one wanted to talk about him. My mother went back to finish her day’s work in the department store after Rodney’s funeral. I was on my own. Eventually, I too, hopped into the boat with the others, pretending and half believing that Rodney’s short life meant nothing. For too many years, I went with the flow. I was delighted to be pulled out of that boat by John’s quiet determination that Rodney belonged with my other children in our family.

As a child of about 12 or so, my mother told me I was secretive. Even then, I knew, this was unfair. So much was taboo, so much that could not be mentioned and I, like the rest of the family, developed the habit of silence. Anything to do with sex did not exist. She told me, when I was 8, that the woman next door had a huge tummy because she had eaten too much rice! I remember walking over a bridge with some friends on our way to school when a group of boys under the bridge looked up our skirts and made obscene remarks. “I’d like to fuck her,” one said. I asked my friends what he meant and was told for the first time about penises and vaginas. Other taboos included not being allowed to tell anyone that my father was a gardener—it was much too lowly an occupation for my mother who aspired to climb out of our English, working-class roots. My homesickness, when I was 7, was never allowed a voice when I was trying to make sense of our new world in Australia. Worrying what the neighbors thought was my mother’s major preoccupation. And, I was secretive! I learned what I was taught—to be silent.

I, no doubt, caused my mother untold grief. I was pregnant when I married Bill in 1969—a matter of great family and social shame. My pregnancy with Rodney so soon after Toni, was, I think (I don’t know as it was never said) another disgrace. I sensed that my mother believed I could not control myself. Perhaps, she saw Rodney’s death as a relief—an undoing of my mistake. As usual, I don’t know. We did not talk about such things. She lived until she was 87, living her last year with us, but did not once mention his name. Rodney was a blip on the landscape, best forgotten.

Rodney was born into a family background similar to that Poulos (2006) experienced, of “dark silence, a silence of truths unspoken and stories untold” the shadows causing dire consequences to the family’s functioning (p. 107). Smart (1993) argues that death replaced sexuality as the 20 century’s “pornographic topic” (p. 57). If the deaths of adults could not be mentioned, the deaths of babies and children were even more taboo.

After Rodney’s death, I withdrew from friends and family, functioned mechanically and basically got by. Toni deserved better. Derek the “have another baby” child, was not truly enjoyed, as babies should be. I was detached from my feelings, detached from other people, alienated in a thick comfortable, cushioning cloud. I looked for ways to stimulate my way out of this overwhelming flatness. I went to art school for a year. Bill and I indulged in smoking dope and having illicit affairs with other people from our friendship group. Nothing worked. I felt worse. One day, when Derek was still a toddler, I drank an enormous amount of grog, took some pills and went to bed. I came to in a hospital ward with a young intern standing over me saying sarcastically, “Did your boyfriend leave you, did he?” Bill did not help either, he was angry with me but I didn’t care, it felt so good being in a hospital ward being cared for.

I was sent off to see a psychiatrist who wanted to medicate me and was not helpful. Gradually, my depression lifted and I began enjoying life especially in the Adelaide Hills where we bought a small farm. Then Toni was diagnosed.

It seemed imperative to become ultra conservative. We left the Adelaide Hills and moved back to Canberra. Bill settled into a 9 to 5 job and we focused our attention on Toni’s well-being.

My relationship with Derek was complex to say the least. Of course the influence of Toni’s illness and death was all consuming and Rodney, the brother he never met had always had a ghostly presence. During the last year of Toni’s life, Bill and I separated, then there was just Derek and I. I was terrified that somehow he would also die. My fear was paralyzing. I tried not to love him. Rather than overprotect him, I reacted in the opposite way, giving him too much freedom and then worrying endlessly. He acted out at school, being the class clown and disrupting every class. As soon as he could drive, he drove my car recklessly getting himself into all sorts of scrapes. Even though he was wayward, he was always well-mannered and very likeable, even loveable. It was miraculous that he suddenly turned the corner when he was about 17, applied himself to study, and became a beautiful, big-hearted successful young man who knew more about adversity than any of his peers.

When he was adult and went to England, I tried to detach myself, thinking that now it was up to him and not my problem. Of course, regardless, he was always on my mind. Eventually, he returned to Bendigo in Victoria and we were able to begin developing an adult-to-adult relationship. There were places our conversations could not go. I tried to talk to him about his childhood but it was a “no go” area for him, except one day he asked me to take him to the cemetery. I held him as he collapsed into harrowing sobs.

I did not think I would survive Derek’s death. I was at times consumed by a murderous rage that was overwhelming, all encompassing, uncontrollable. It would become unleashed on whatever hook became apparent. John bore the brunt for often-trivial reasons. I fantasized about swimming out to sea. Swimming out so far that I couldn’t swim back. John was my reason for eventually choosing life.

But as the middle-aged character in A Little Life says about the grief he experienced with the death of his son,

But here’s what no one says—when it’s your child, a part of you, a very tiny but nonetheless unignorable part of you, also feels relief. Because finally, the moment you have been expecting, been dreading, been preparing yourself for since the day you became a parent, has come.

Ah, you tell yourself, it’s arrived. Here it is. (Yanagihara, 2015, p. 164, emphasis in original)

So I live my life now free from the worry that anything so great can hurt me in the future. Except John, except anything happening to him. As we age of course it’s on the cards. I’m proud that I no longer hold him at arm’s length, I figure what will be will be.

I am sad. I love my children and I miss them.

The past cannot be changed. I have learned through attention to the lessons of my life, my research, and reflective thinking, as well as the healing power of love, to loosen its nightmarish charge. Now that the clutter in my head has been somewhat sorted and exposed to new ways of knowing, the pain in my heart has eased and my anxiety has dissipated. Some of the debris of shame, guilt, and angst has been swept away and I am finally free to remember Rodney with love. The high-intensity, indelibly etched scenes from those dreadful times will remain as testimony to a maternal primordial instinct to fight to protect against playing the role of the “civilized” and compliant good mother in the extraordinary world of baby and children’s hospital wards.

I was an ordinary mother and woman of the times. Culture exerts a strong grip in complex ways over what is possible to think and do in lives that might look as though they are simple to lead (Foucault, 1990), and as Foucault suggests, we can learn to loosen the grip that culture exerts. I cannot, though, go back as the strong woman I have become and act differently in my old life, but I can attempt to redress the past with coming to know and tell the stories of my mother-love for Rodney.

I’m angry that the 21-year-old me had to go through so much. I regret that Rodney’s life and death was lived in an era lacking compassion, emotional openness, and a denial of the opportunity for me to grieve. I’m sad that my traumatic experience clouded my ability to fully enjoy Toni and Derek. I am aware that I share a history with many women whose lives were irrevocably changed by traumatic experiences during the callous culture of the 1960s and 1970s. My hope for the future is that by making the private public, the imperative to treat the vulnerable with compassion and respect is realized. I am aware and appreciative too, that in death, Rodney has expanded his social network manyfold with each new reader.