Hello Rowan. It’s the second day after you were born. It turns out you weren’t in fact perfect, even though we think you are. You’ve got a problem with your body. You’ve scared us a little, but we’re sure that you’ll be OK. You’re being operated on and you’re only two days old and that’s pretty scary. You should feel very special that you’ve made it through this. I think it is really important that you know what happened to you, for your own benefit and partly for ours. See you later.
These are my words spoken to a video camera. I am sitting, leaning forward in a chair in a hospital room that is painted off-white. I look tired and am fighting back tears. Rowan is in theatre. My claim about being sure that he will be OK is more hope than certainty.
My wife, Janine, and I have just returned from the entrance to the theatre where we were allowed to hold and kiss Rowan before he was wheeled away. He looked so small on the gurney. Both of us feel numb, neither quite believing that these events are happening. We cry again. It will be three hours before we hear anything from the surgeon.
Rowan was born in the Royal Hobart Hospital on July 1, 2003 at 9.37pm, weighing 4.07kg.
It had been a rough 22-hour labour for Janine. A two hour wait for an anaesthetist to be located and an epidural delivered resulted in considerable pain and near exhaustion. This was followed by a forceps delivery.
I was in awe of what she had managed to do. I thought over and over, ‘My god, it’s a baby! You had a baby!’
Rowan’s arrival is the best moment of my life. I was crying as the midwife declared, ‘Look at the size of his feet.’
I remember cradling him in my arms and walking up and down the hospital corridor that night. I was speaking to him, telling him how wonderful it was to have him here. I gasped as he gripped my finger when I placed it in his palm.
The paediatrician informed us that Rowan was healthy and strong, perfect in almost every way. All was well, except for Janine’s tiredness and her need to heal. Family and friends were told the good news, flowers arrived and compliments about our beautiful baby were received gratefully.
Looking back at the video tape of the day after the birth, everyone looks happy. Janine’s support person, Kris, and her mum, Pat, are smiling and laughing. Rowan is swaddled in a blanket and is peaceful. Holding him is a treat.
The prospect of how to actually look after a baby was in the back of my mind. The theory we had studied so assiduously in the lead up to the birth seemed inadequate when faced with the prospect of putting it into practice. For a start, Rowan moved and cried unlike the dolls that we had played with in the pre-natal classes. I had never changed a poo-filled nappy over the course of my 30 years. It was a lesson that I would not learn for another two.
It had been a good first day, although the nurses were monitoring Rowan’s feeding closely. Janine’s breast milk had not come in yet, but it was evident that Rowan had a strong suck reflex. Attempts were made to feed him small amounts of formula. He regurgitated whatever he swallowed.
We were told that there was nothing to worry about and that this problem is not unheard of. ‘He’ll come good,’ said a nurse encouragingly.
At about 7.30pm, a different nurse is teaching me how to change a nappy. She is patient, good with Janine and sure-handed with Rowan. I like her. She instructs me, ‘Lift his legs gently. Only a little…Now wipe the crevice between his cheeks.’
I follow the instructions, handling him like he might break if I apply too much pressure with my fingers. Something catches my eye. I ignore it and lower Rowan’s bottom back down on to the towel that is spread over the bed. I take another quick look to satisfy my curiosity.
‘He hasn’t got an anus,’ blurts from my mouth.
This makes no sense and I look at the nurse seeking reassurance. I believe that she will tell me everything is all right. I look at her and her brown eyes widen. She is staring at me, genuinely startled. She says nothing.
Janine is sitting up in bed looking worried. Like the nurse, her eyes are saying more than enough. The nurse then looks between Rowan’s buttocks. She mutters something that sounds like, ‘Of course he does.’
She then gasps, ‘Oh my god, he doesn’t. There’s nothing there.’
The room is still and suddenly humid.
She walks from the room quickly and half-a-minute later other nurses come running in. A code is announced over the PA and two doctors enter hurriedly. There are people everywhere. Janine sits on the bed, stunned. I am moved to one side while Rowan is examined. ‘None of this makes any sense,’ is all that I can think.
Our paediatrician enters. She has come from home. A rapid-fire conversation ensues between her, the other doctors and the nurses. Rowan is gone. Spirited away to god knows where. I am unable to follow what is going on. ‘None of this makes any sense. None of this makes any sense. None of this makes any sense. None of this….’
Janine and I hug. She is crying, almost chanting, ‘That’s why he couldn’t feed. That’s why he couldn’t feed. And they kept trying to feed him.’
The paediatrician re-enters the room. I find this strange because I have no memory of her leaving. I stare at her bug-eyed. We are told that Rowan has an imperforate anus. There is only skin where the opening should be. She says, ‘I’m so sorry. I’m really sorry. I missed it in the initial examination. This must be like hell for you.’
Two things matter at this point. The first: is he going to die? The paediatrician and other hospital staff that we speak to are noticeably cautious in their choice of words, not offering any assurance on Rowan’s life, although they are reasonably confident that he will live.
I envision a lawyer delivering a training seminar to the doctors and nurses on what to say in this type of situation. Qualifiers, no promises, remain clear headed in the face of emotional parents. This is the land of bloodless language and limited liability.
The second issue is what happens next? The answer to this question only makes sense in retrospect and with access to Rowan’s impressively thick hospital file.
He was rushed to radiology where he was anaesthetised and a series of x-rays and tests performed to find out as much as possible about his condition. He was to be operated on first thing the following day. His bowel would be lifted to the outside of his abdomen, allowing faeces to leave his body. He would then be allowed to feed.
We were escorted down the hallway to the Neo-Natal Intensive Care Unit (NICU) as soon as Rowan was returned from radiology. He lay unconscious with tubes and wires attached to different parts of his body. His stomach was slightly distended; waste unable to exit.
I had never seen a room like this before. Two babies, one of whom was Rowan, lay on tray-like beds with heat lamps above them. The NICU nurse explained that we could visit him at any time of day or night and stay as long as we liked. Her eyes were bright and she projected optimism. She said he was a gorgeous baby and he had the most beautiful mouth she had ever seen.
The paediatrician visited again, saying that we would meet the surgeon first thing in the morning. We were left alone with Rowan. I placed my hand on his torso. He was warm. I removed my hand. My eyes were bleeding tears. Janine and I held each other.
A short time later I am standing outside the hospital. It is cold and the streets are empty. I pump coins into a payphone while watching police and a group of tattooed and bearded men walk in and out of the emergency department. There are raised voices. I speak to family members. I burst into tears each time I explain what has happened. The news could not have been more different than the last time I had spoken to them.
In the years preceding these events I had not viewed being a parent as an essential part of life. I thought that if it happened, great. If not, there were still plenty of other ways to achieve a meaningful life. I was wrapped up in my work and had an exaggerated sense of my abilities.
My heart had jumped when Janine visited my office unannounced and told me that she was pregnant. Six parts joy mixed with four parts terror, or were the numbers the other way around? I knew Janine would make a great mum, even though she had her doubts. I, on the other hand, had always looked at kids with bemusement. They seemed odd and slightly grubby.
I was anxious about bonding with the new baby. Would I feel anything for him or her? What if I didn’t? Would this mean I was a bad father?
These doubts were forgotten the moment Rowan arrived. My feelings were like a tidal wave, catching me completely unprepared. My trademark cynicism gave way to tears, kisses and what I once would have described derisively as sloppiness.
Emotions ran impossibly deep after I returned from making my phone calls. I stood in the NICU looking at Rowan for the next couple of hours. I was not coping.
The paediatric surgeon met with us in the NICU early the same morning. He was tall and had an accent that was impossible to place. He was sparing with his words and seemed tense. Someone explained to us later that he was often like this prior to performing an operation on a baby.
The procedure was explained to us. It made little sense to me or Janine. A stoma would be created over which Rowan would wear a colostomy bag. Questions circled in my mind endlessly.
What’s a stoma? Do babies actually wear colostomy bags? More importantly, what is a colostomy bag? Don’t old people wear them? What happened to his bum?
The urgency of the operation was made clear to us, as was the need to sign a release for it immediately.
It was the longest day. Rowan was meant to be operated on straight away, but for reasons that remain unclear, he was not wheeled into theatre until early that night. I spent periods in the afternoon looking out a window overlooking the Police Station on the other side of Liverpool Street. ‘I hate this hospital,’ I said to myself quietly. Anger was curdling with the shock and upset.
The operation went as planned. We saw Rowan again in the NICU afterwards. He was wearing dressings over his stomach and looked pale. We stayed with him, caught somewhere between sleep and consciousness for much of the night.
The diagnosis was a high-set ano-rectal anomaly with a sacral abnormality. (Translation: he had no anus and his tailbone had developed strangely.) There was also a fistula, or connection between his bowel and bladder neck. This caused small amounts of faeces to travel into the normally sterile environment of the bladder, creating a urinary tract infection. The fistula would need to be excised in the near future and daily doses of antibiotics would be administered in the mean time.
As with most medical terminology understood from the perspective of a layperson, all this explained everything and nothing.
No one could tell us why Rowan had been born this way. Janine had been disciplined throughout her pregnancy, eating the right foods, abstaining from alcohol and she was a non-smoker. She knew the risks and avoided them. There was no family history of birth defects on either side. We believed that we had the ingredients for a healthy baby.
Estimates vary, but the incidence of Rowan’s condition is about 1 in 5000 babies. We had won the lucky dip for the Royal Hobart; the first case that year.
The Royal Hobart, a large, imposing structure in desperate need of refurbishment, is a teaching hospital. Medical students came each morning to see the special case in the NICU. ‘Roll up, roll up.’ It was hard not to spit at them. The paediatrician also took a photo of Rowan for her teaching in the medical school. ‘There you go Rowan,’ I said, ‘you’re a case study. And you’re only three days old.’ She laughed, failing to detect the venom behind my deadpan delivery.
The cause could have been genetic, environmental or both. The geneticist who visited from Melbourne had no answers. He offered no guarantee on whether it would happen again if we decided to have another child. He said, ‘Everything would probably be fine. But there are no promises.’ I heard the singsong of a lawyer in the background again.
Acronyms spoken in the hallways of hospitals possess a hidden menace. EEG, AGA, SUR, NTD. According to the Doctor’s Reference Site, there are over 5000 acronyms related to health in Australia. They sound so clean and efficient, especially when delivered by a doctor who embodies the science that spawned their creation. For the patient, though, they are a foreign language that precipitates as-yet-unknown trials and pain.
Our biggest worry was VATER syndrome. VATER stands for Vertebrae problems (check), Anal anomalies (check), Trachea problems (no), Esophageus problems (no evidence), Radial bone anomaly (no) and/or Renal problems (maybe).
We were assured that Rowan appeared neurologically fine. However, I was finding it difficult at that particular moment to trust the judgement of any doctor given what had already transpired.
There was also the possibility of tethered cord, a lower spinal cord abnormality that would not manifest until he was older. This may cause a loss of function in Rowan’s legs and/or bowel and bladder. Threatening clouds hung overhead for the next nine months until further tests were finally completed.
We just wanted to take our baby home. Another couple that we had completed pre-natal classes with arrived and left weighed down by balloons, flowers and a new boy, who sported an impressively thick head of blond hair. They asked how our baby was, and were caught off guard when I told them what had happened. Awkward does not even begin to describe the short silence that followed. I was jealous, they perplexed. ‘Bye. Good luck. Congratulations,’ I said weakly.
Rowan would need to feed and gain weight consistently before we could leave. His parents had to master the art of changing a colostomy bag, using the various wipes and cloths, monitor the condition of his skin and hope that he stayed still long enough to allow us to complete the task. We also had to get used to the idea and sight of poo coming out of Rowan’s lower belly.
Janine was exhausted, having had little rest since her labour. Her breast milk was still not coming in because of stress. This was an added pressure that piled on top of her scarring, which had extended well beyond the physical over the past three days.
I look happy in the photograph taken by Janine’s mum when we eventually arrived home with the boy over a week later. I think I had managed to convince myself that the crisis was over.
Over the following 27 months, Rowan was operated on another three times, put under general anaesthetic for procedures six times, and I quickly lost count of the x-rays and visits to doctors and specialists.
Janine trawled the World Wide Web for information about Rowan’s condition. She discovered that there were many children in the United States with ano-rectal anomalies who had been through 15 operations or more. I found it difficult to believe at the time, but we were lucky.
Almost perversely, Rowan was a happy baby. His laughter was a delight and he was precociously bright. He ate voraciously and grew at an almost alarming rate. Judged by the standard height and weight measures, he was a two-year old at the age of one. He learnt to stay still while his colostomy bag was changed and cultivated a love of sleep that was the envy of other new parents.
By contrast, Janine and I were struggling, badly. I fear for what might have happened to our marriage during that time if Rowan had not dragged us out of the mire with his cheekiness.
People’s reactions when they discovered Rowan’s problems were often curious. They ranged from the all-too-Australian ‘chin-up’ or ‘he’ll be right’, through to a stunned silence followed by ‘but he looks so healthy’. There was also, ‘It could be worse’; a truism of limited use when someone is upset.
‘Lucky you, not having to deal with pooy nappies.’ This was an occasional comment, delivered with a smile by another new parent.
‘Yes, it’s great. You should get a stoma surgically created for your baby.’ I wish I’d had the courage to say what I was thinking.
Probably the most difficult to deal with was ‘but you still love him’. This was a wounding response delivered by a friend who had the best of intentions. I felt like screaming, ‘Of course I bloody love him. What’s that got to do with it?’ Sleep deprivation, anger and depression pervaded my being, making me unable to see the point of this statement.
The problem in many people’s reactions was an implicit negation of his condition. ‘Love’ or the fact that he ‘looked healthy’ was meant to be enough for him and us to cope. Sometimes it was and sometimes it wasn’t. Janine and I bawled, raged and stared into the night desperate for sleep to insulate us against worry. Rowan played, cooed and grew more mischievous by the day.
Other parents with young kids appeared the most unable to process the news about Rowan. This observation is not true of each and every parent we met, but there was no mistaking a pattern in responses. Many appeared confronted by the prospect of a 1 in 5000 anomaly. The sheer dumb luck of it combined with the image of surgery on a baby underlined the vulnerability of their offspring.
No one wants to see or think about a child in pain, let alone contemplate the fact that there are no promises in the future for any of us. Their responses betrayed a desire for Rowan to be normal, which he is. He is happy, smart, and by most measures, a picture of good health.
But there was something else for him and us to confront that most people had never experienced. To deny this, albeit unintentionally, would allow his assimilation into their experience. He would be OK because kids get better after seeing the doctor, operations fix problems and children bounce back quickly from setbacks. This was most people’s reality, but Rowan’s ongoing need for medical care and treatment was jarring against it.
Shortly after arriving home with Rowan, our surgeon recommended that we travel to the Royal Children’s Hospital in Melbourne for the next operation. He felt that another doctor, who was an expert in ano-rectal anomalies, should treat Rowan. I resolved to apply for jobs in Melbourne immediately in order that we could move there permanently. ‘I’d swim there if necessary,’ I told a friend on the phone one night. She laughed. I was serious.
We flew over the water between Tasmania and Port Phillip Bay in May 2004. A pull-through procedure had been scheduled. This was surgery to create an anal tract and bring Rowan’s bowel down through the area where it should have been.
The outcome would be uncertain. Some children achieve bowel control. Some require careful management of bowel movements through diet. Others never gain control. There were no promises.
The lead up to your child’s operation is in some ways harder than the actual event. Anxiety builds, scenarios both foul and fair play out in the mind.
People tend to approach trauma as if there comes a point when ‘you are over it’. But this is not the way emotions and the mind work. Experiences mark us. These marks are permanent and we must learn to live and cope with them. The fear of something crucial being missed by a doctor and Rowan being taken away again haunted our existence.
The Royal Children’s Hospital provided respite. The social worker who met us upon our arrival suffered none of the suffocating pity that her profession is derided for, providing practical assistance of inestimable value. We also visited a stoma nurse. She had kind eyes and turned out to be a Florence Nightingale character for kids with colostomies, as well as an alchemist who plied balms, barrier creams and wipes that transformed skin irritations and rashes around a stoma to clear, clean pink skin.
Two steps were planned. First, a CT scan of Rowan’s pelvic area would be performed. With the images from the scan available for guidance, the pull-through operation would then occur the following day.
Two young doctors, a man and a woman, arrived as we were unpacking in the ward. They spoke to us about what was going to unfold and explained that the surgeon, a Professor, would be along shortly to meet with us. They said the Professor’s name in almost hushed tones and spoke glowingly of his abilities. The man who appeared before us was a bearded, bowtie wearing middle-aged man. Affable, communicating directly and clearly, he watched Rowan purposefully, sizing the boy up. He instilled me with confidence in his ability.
In the afternoon Rowan was rendered unconscious again and the CT scan performed. The results were in.
We were shepherded into a large seminar room. Three other people accompanied the Professor. One of them was the young female doctor from earlier in the day. I was worried. Why so many doctors?
No tethered cord, no renal problems and no VATER syndrome. All ruled out, definitely. Rowan’s problems were localised. I looked at Janine, searching her eyes in case I had misheard. I hadn’t. ‘Thank you.’
The bowel is high-set. There is no guarantee that a pull-through operation would be successful and he would probably have little or no muscle control. This would mean constant soiling and no chance of toilet training.
The Professor told us that he was not going to perform the pull-though operation the next day. He wanted us to go away and think about whether the operation was worth the risk. A permanent colostomy for Rowan is suggested. We were being sent home. I couldn’t bring myself to look at Janine.
Rowan crawled around the room as people spoke. He grabbed the Professor’s brief case and banged on it, laughing. He crawled up the knees of the other doctors, smiling and babbling. He lifted himself up on a chair and yelled at everybody to gain their attention when finally seated. He repeatedly threw himself on the floor and lifted himself up again, laughing. Everyone was having difficulty keeping a straight face despite the gravity of the discussion.
I attempted to gather my thoughts as the Professor continued talking. He still wanted to perform a laparoscopic procedure on Rowan the next day in order to get a more complete picture of his bowel and to do some ‘first aid’ on the fistula. This would provide further information about the specific nature of his anomaly and hopefully help us in making our decision on whether to proceed with the pull-through operation.
Another sleepless night was followed by obscene quantities of coffee as the sun rose.
Rowan charmed everyone again before going into theatre. He insisted on reading his Fox in Socks Dr Seuss book, showing anyone who came past the gurney the pictures while hugging his favourite soft-toy monkey.
The picture afterwards is very different.
Rowan is in pain and groggy. He has a catheter in and a drip in his hand, held in place by a bandage and a soft splint. Rowan clenches his fists, pulls up his knees towards his chest and screws up his eyes, moaning. This happens repeatedly. He begins to cry. It is impossible not to be upset. Tears are coming from Janine’s eyes and I look away trying to compose myself. The nurse assures us that the morphine will work soon. It feels like an eternity.
The recovery room is an unforgettable setting. A battery of fluorescent lights emits a glare that is too harsh, too white. The beeps coming from the various machines invade the senses, and the cacophony of voices and unidentifiable background noise agitate. Other children and babies wake from operations, disoriented and in pain. It is a large room, capable of holding many beds and it feels as though Rowan might become lost in the expanse, forgotten amongst the mass of tasks performed by the nursing staff.
The surgeon tells us that the procedure went well. He has tied off the fistula with the medical equivalent of fishing line. There was an infection in the bladder. ‘It is difficult to believe with such a big, happy boy, but this has stopped him developing to his full potential,’ he says.
The other news is that the muscle development in Rowan’s anal tract was better than the CT scan had indicated. The prognosis is more promising than anticipated. My breathing changes upon hearing this, becoming less shallow. Janine sits up straighter in her chair. The likelihood of reasonable bowel control is ‘50/50’. The question is asked, ‘What would you do if it was your child?’
‘I’d go ahead with the pull-through,’ the Professor says and smiles.
Ten months later and we are back in the Children’s Hospital in the same ward as last time, 4 Main.
Since our last visit I have started a new job in Melbourne at an institution, which if the marketing literature is to be believed, is both energetic and dynamic. We are also renting a house in Bentleigh, a suburb that appeared to have more prams than cars.
Life had developed a nice rhythm since the last procedure. Events in the Royal Hobart seemed a distant memory, Rowan was growing and interacting with us more, and the visits to the doctors and hospitals slowed. Changing colostomy bags became routine, normal even. The new pattern of family life was a comfortable fit.
The lead-up to the pull-through operation shatters the peace. Three days before admission I declare that I want to cancel the procedure, ‘He’s fine the way he is.’ I do not want Rowan to put be under again and operated on. I am scared, running on adrenalin and emotion. Janine talks me down.
The operation goes to plan. Rowan has an anus. I find this strange and am surprised by my reaction. The colostomy bag is to remain until the new anal tract is healed. Another operation will be needed to close over the stoma.
Rowan wakes in the recovery room. Pain management proves to be a problem even after returning to the ward. He vomits. A combination of morphine, antibiotics and over-the-counter Nurofen set Rowan right. It has taken a day and half to find an effective mix.
I sleep next to Rowan on a pull-out bed over the next five nights.
The Royal Children’s Hospital is a large complex of buildings situated on Flemington Road in Parkville, not far from the city centre. But it is also a living, breathing organism. It’s pulse quickens in the morning. As the day begins, more and more people file through the many entrances and move with purpose throughout the hallways and stairwells. Late afternoon witnesses a slowing of activity. The hospital relaxes perceptibly. The lifts become less crowded. Staff move just a little bit slower and their conversations become more relaxed and wide-ranging. Parents begin the early evening ritual of finding something to eat, brushing their teeth and changing into sleepwear. Visitors arrive and leave. By about 9.30, the lights are dimmed and those staying in the wards are ready for an attempt at sleep.
A distinctive feature of the hospital is its sounds.
The background noise during the day is not dissimilar to a shopping mall. Countless voices, both loud and soft, children laughing and crying, parents talking, televisions and computer games blaring, beeping emitting from various machines,; an unceasing dull roar pervades the ears.
At night the noises become specific, identifiable. A child recently returned from theatre crying, a parent trying to calm and comfort them, a conversation between two nurses about a patient or what they are doing on the weekend, a television left on to comfort a young boy who is afraid of the dark. Some sounds are comforting, while others make the heart ache.
The children breathe life into the hospital, as well as being its soul. Incredible humour and pathos flow from their actions and words. The sight of two five-year-old girls, ‘best friends’ they declare, dancing and singing along to Hi-5 on the television brings laughter from nurses and parents. Both are careful to avoid tripping on or becoming entangled with their drips as they dance. These girls are suffering from renal problems, have had multiple operations and appear to more or less live in the hospital. The smaller of the two has a birthday coming up on Saturday and is bossily telling anyone who will listen what presents she expects to receive.
Contrary to the popular notion of children as innocents, some of the patients in the ward have eyes that are unmistakably wise. They know more of the endurance of pain than most adults. I find the example of the toddlers instructive. If they are in pain, they show it. But once this passes, they return to play and search for amusement. No lingering self-pity. I wish to be more like them.
I am constantly on guard, watching and listening for any sign from Rowan that might indicate pain or discomfort.
His arm is in the air and he is making small circles with his hand. I spring upright and swing my legs off the bed. Standing over his cot, I make to check his breathing, worried that he is unable to speak for some reason. I hesitate and watch him. He starts whispering, ‘Wokka, wokka, wokka, wokk.’ His arm falls back to the bed, he stretches and goes back to sleep.
I smile and then laugh. In a semi-conscious state, Rowan has been singing his favourite song from Play School, complete with accompanying arm movement. The song goes, ‘Wokka, wokka, wokka like a helicopter.’ Comedian and actor Rhys Muldoon is the man who delivered the original version one weekday morning.
I sit back down and reach for my mobile phone. My eyes adjust to the light emanating from its small screen in the dark. 3.37am.
There are nights when I find myself sitting in the McDonalds franchise attached to the hospital, sucking on a chocolate thick-shake through a big straw. I have left my mobile phone number with the nurse once Rowan is asleep to take a 20-minute break. Sitting idly at one of the plastic tables is a pleasure. This is a space that is in the hospital, but not of the hospital.
I am forced to contemplate my hypocrisy with each visit. I claim to abhor McDonalds and the corporation’s homogenising global project. I resolve to exempt this particular outlet from my politics. It is a link to a world outside the hospital’s doors and offers relief.
I travel down a long hallway on the walk back from McDonalds to the ward. On the right, about a third of the way along is an entrance way to a chapel. I dare not look sideways for fear of seeing a parent who has been praying for the life of their child. Contemplating the mortality of the young is unbearable.
On the sixth day Rowan is eating, pooing into his bag and wetting his nappies. The nurse informs us that we are free to leave. We are dressed, packed and gone in under thirty minutes.
A friend once said to me that the most pain a parent ever suffers is when their kid is hurt. Janine and I discovered the truth of this statement over the following months.
Preparations were required for the approaching closure of Rowan’s stoma and the engagement of the distal segment of his large bowel and new anus. We are introduced to the idea of daily dilations during a visit to the surgeon.
Once a day we would insert a small metal rod into Rowan’s anus briefly and remove it again. The action would be repeated. Generous amounts of lubricant would be required, but we were assured that the exercise would be ‘reasonably straightforward’. This aim of this routine is to stretch the skin around his anus to the required size, making it possible for stools to exit his body. A size eight rod would be used initially and we would taper up to a size 12 over the coming months.
Janine prepared Rowan for what would happen. On the advice of a psychologist at the hospital, a hole was drilled in the bottom of a doll in order to simulate the dilations. Rowan would be made aware of what was going to happen by demonstration. In toddler friendly terms, we also explained that this was to prepare him for the approaching operation.
I felt deviant sliding a metal rod in and out of the bum of a doll, in spite of knowing the worth and logic of the exercise. Rowan, thankfully, understood quickly and showed us by taking the dilator and pointing it towards his bottom, saying repeatedly, ‘In there.’ I shook my head, almost disbelieving.
The first attempted dilation on Rowan took place late on a Friday afternoon. We arrived at the office of a surgeon who had assisted the Professor during the pull-through operation. He would perform the act, allowing us to observe the required technique.
Blood, screaming, tears. Rowan was in serious pain and I had to hold him down forcibly. The doctor couldn’t get the rod into his anus and eventually stopped trying.
The dilations, it was explained, had to occur. There was no choice. If we did not do them, the anus would not work properly. We had already come too far to go back.
Janine and I were stunned afterwards and fearful of the impact of this experience on Rowan. We drove home, mostly silent. Rowan was fed and put to bed. An unspoken guilt permeated the house. Janine went to bed early and I self-medicated, drinking too much.
The initial successful dilation took place the following Monday in hospital with Rowan under a general anaesthetic. Janine went into operating theatre while I waited outside. The procedure went smoothly, although Janine is fighting back tears when she re-emerged. No blockages or unexpected abnormalities in the new anus are reported.
For the next four months, the worst part of the day is the dilation. Rowan knew what was coming and would fight and cry on his change table. Afterwards Janine and I would hug him and reward him with a toy or a game. His favourite was sitting in the car in the driveway pretending that he was driving. I would sit next to him in the passenger seat, usually with a headache.
There is nothing that can make hurting your child feel right. No amount of rationalising or intellectualising overcomes the guilt. Rowan was in pain and we were causing it. It was as if we were colluding to perform a sadistic act on our baby. I knew that this was not the truth of the matter, but the feeling stained my conscious. Both Janine and I became deeply depressed and stopped talking to each other.
We knew that the reason for performing the dilations was legitimate. Children with ano-rectal anomalies can come to resent their condition as they get older. Run-of-the-mill teen angst merges with feelings of difference, but with an obvious physical dimension added to this common experience for young adults. Even if Rowan never became continent, at least we could tell him when he was older that we tried to have the issue addressed.
Unexpectedly, after about two months, Rowan began to accept the dilations. The skin was stretching as we tapered up in rod size. His legs could be held gently and as we instructed him to relax, he would lower his bottom down on to the change table. The dilator would slide in and out. ‘Done’, he would announce. A hug from Mum and off he would run with a fresh nappy.
The guilt of his parents remained, but we gradually learnt to live with our actions and each other again.
October 2005. We are back in the Royal Children’s Hospital, hoping that this will be Rowan’s final operation. His stoma is to be closed, allowing the engagement and use of the lower section of his bowel and anus for the first time. He enters theatre early in the morning.
In the afternoon I am standing next to Rowan’s cot. He is unconscious. I draw back the sheet that lays over him, but I am afraid to look. I glance quickly and turn my head away. ‘Nothing too shocking,’ I think to myself.
I turn my head back again and stare. No stoma. A large scar, which is about 8cm-long sits on the left hand side of his lower belly, running at a 40-degree angle. It looks red and sore. The sight of the skin across his lower belly without a colostomy bag is unfamiliar to me.
This is what Janine and I had hoped to see for over two years. She is happy and talks about how great it is to see him without the bag.
Cosmetically at least, Rowan has been returned to his original state; the one that had seemed so real to us before the unexpected discovery of his imperforate anus. Equilibrium has somehow been restored.
It feels like we have a normal boy again. I know that this thought is ridiculous and shallow, but the dreams of a new parent are powerful. You want a perfect child, with all the hopes for their future that travel with this desire. When something goes wrong with your baby, these dreams are thrown into doubt and begin to taunt you mercilessly.
Three days later I am woken early in the morning in the ward. Rowan is uncomfortable in his cot. I ask him what’s wrong. ‘Take off nappy,’ is his reply.
I start removing the nappy, pulling it back to reveal a sludgy brown mess. I observe the nappy for a couple of seconds, fascinated. ‘You did a poo,’ I say.
I am worried that he will be upset by a sensation that was previously unknown to him. True to form, Rowan confounds my expectations. He looks at me and says, ‘I did a poo. Like Mummy and Daddy do poo.’
Janine had again prepared him beautifully for this moment. I feel humbled by her perseverance and strength.
Over the next three days the stoma nurse offers instructions on how to care for the skin around his anus with various creams and ointments. Janine and I get used to the new nappy changing regime. The novelty does not wear off.
Rowan begins to eat properly again and the tenderness of his stomach subsides. We leave the hospital at lunch time on a Thursday, visiting the Starlight Room before leaving. We want Rowan to enjoy its toys and games one last time.
Rowan’s difficulties are not over. It is yet to be understood whether he can feel the urge to defecate and achieve continence as he gets older. He poos constantly, suffers stomach aches, and his bottom is sore from excoriating highly acidic faeces. The dilations will continue for a short time. Janine and I are concerned about finding a welcoming childcare centre that will accept a three-year-old who is not yet toilet trained. This training is a long way off and may still be an issue when it comes to schooling.
As he always has, however, Rowan floats effortlessly over the waves of discomfort and inconvenience. He appears more worried about being allowed to watch endless replays of Bob the Builder and Finding Nemo.
Love and pain are bound together. Inseparable, one determines the condition and inevitably of the other. They develop and diminish us as we experience them, unlocking doors in our minds and hearts. What we find behind these doors can be both comforting and terrifying.
This is the paradox of Rowan and his entry into my life. But is one that I have come to treasure.
My love for him is real, constant. The true nature of many of the things that I thought important prior in my life to his arrival has been revealed. They are mere vanities and distractions. I understand that he is a gift that must be nurtured and protected. Most importantly, he must be allowed to discover and appreciate the ineffable gift of being.
There have been times during the past couple of years when I have felt that life could not get much worse. Looking back, I now understand the degree to which depression and self-pity cloud perspective.
I am visiting my psychologist on an overcast day in April of 2005. The dilations are ongoing and I loathe myself. He stares at me. ‘You cannot carry the world on your shoulders. You need to stop thinking that you can. You have to find some faith,’ he says. I shoot back with typical certainty that I don’t think God will provide any answers. Accompanied by a look falling just short of pity, he states, ‘I’m not talking about God.’ This moment is horrifying for me. He has seen through my clever words and self-deception.
I travel home by bus that afternoon. I see Rowan playing on the lounge with a toy train through the front window of the house. He has not yet seen me. Watching him, I am certain that he is the most wonderful person to have ever existed. To a disinterested observer, it may appear that love and adoration have also clouded my perspective. In my estimation, however, they sharpened it.