Mending a Broken Heary

heart4p 1/27/11 10:19 AM

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Nadine Raal

MENDING_BROKEN_HEART.indd 3 2011/01/27 12:08 PM

Published by Jacana Media (Pty) Ltd in 2011

10 Orange StreetSunnysideAuckland Park 2092South Africa+2711 628 3200www.jacana.co.za

© Nadine Raal, 2011

All rights reserved.

ISBN 978-1-77009-909-8Job No. 001420

Cover design by publicideSet in Sabon 10.5/15ptPrinted and bound by Ultra Litho (Pty) Limited, Johannesburg

See a complete list of Jacana titles at www.jacana.co.za


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Chapter 1

“i think it’s really happening,” I say to Stewart. I am bouncing excitedly on a big exercise ball in our living room; it is a fiendishly hot October afternoon.

“What makes you think it’s really happening?” he sounds distracted. After all he’s heard this before so many times. Always time urgent and anxious, I have had my hospital bag packed for five weeks, every twitch, every inkling has sent me running to Stew wide-eyed.

“I think it’s happening,” I’ll say and grab my well thumbed copy of What To Expect When You’re Expecting and rehearse the labour part.

Initially he actually responded to these announcements. Now he barely looks up from his Bill Bryson book. This is his third child after all. It’s my first so I’m allowed to be a little antsy. I have been having so-called Braxton Hicks contractions for months but today, four days before my due date they seem a little different, a little sharper.

I pad down the hallway in bare feet to get my hospital bag. In the corner of our bedroom stands my acoustic guitar gathering dust – one of the few reminders of my previous life as a musician. I used to front the country rock outfit Famous Curtain Trick; now I am a freelance


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writer and housewife. Compared to my old life my present existence is comfortable and serene, if a little predictable. You could say I am one of those people who got started a little late. In Stew’s wedding speech he referred to me playfully as “the oldest teenager in town”.

He wasn’t exactly off the mark. I’ve never, except for a brief and horribly boring period of working in a law office, had any inclination or talent for holding down a ‘real’ job. Up until now I have followed my passions. On the musical front that means that I got to share a stage with the likes of Bryan Adams, tour the country up and down in a battered green Citigolf, having a blast playing festivals and clubs. It also meant that I was perennially broke, hugely frustrated and terminally hung-over. Now I spend my working life documenting the lives of sailors, strippers, mail order brides or whatever takes my fancy for various publications.

Right now my life suits me. Stewart is ten years my senior and comes with an ex-wife and two boys who live with their mother. Like me, Stew is not of the mainstream. He runs his own business as he likes to be his own boss and is passionate about surfing, mountain biking and playing the guitar badly. It’s a big step for him to be taking; to be having another child with me, to be throwing his life in reverse and to be going back to nappies and sleepless nights.

I put in a call to our big Xhosa housekeeper, Virginia, to come in early tomorrow morning and to look after our two dobermans. The two of us then set off for Sandton clinic winding through the rush hour traffic. We arrive at the hospital and make our way to the maternity floor. At this point I am not the slightest


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Mending a Broken Heart

bit nervous – just excited. Hugely excited like a kid on Christmas morning. After all these months of waiting, rushing to the Baby Centre website to check my baby’s development at twenty-five, thirty-five and thirty-nine weeks gestation, finally something is happening. At this point even the recollection of the gory birth videos given at our incredibly naff parenting course can’t dampen my enthusiasm.

My doctor, Dr B, arrives at about seven thirty that evening. She is an un-pretentious lady with a quietly commanding presence. She often works alongside her mother, one of Joburg’s first female obstetricians.

In the course of the evening the contractions get only marginally stronger. I am uncomfortable but not in agony and by midnight I have dilated only one lousy centimetre. Dr B gives me a shot of pethidine and I drift off to sleep with Stew in a narrow hospital bed beside mine.

When I awake at five thirty the next morning the news isn’t great. I have failed to dilate and I am put on a pitocin drip. At about eight o’clock in the morning Dr B decides we need to step things up a bit. She then pulls out an instrument that looks like something from the Spanish inquisition and proceeds to puncture the amniotic sac. Stew can’t watch and goes and busies himself with a temperamental vending machine in the hallway. I get up and make my way to the toilet, when litres of amniotic fluid come gushing out onto the floor. A nurse aid looks at me with disdain. Shaking her head she cocks an eyebrow and makes a gesture as if to hand me the mop she holds in her hand.

“And who do you think is going to clean up after you?” she says disparagingly.


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By ten thirty Dr B makes a judgement call. There is evidence that the baby is going into foetal distress. I am completely knackered and still not dilating. It is time to go to plan B – Caesarean.

Within minutes I am prepped for surgery – swabbed with dettol and forced to wear a yucky surgical cap. I say goodbye to Stew as I am whisked away on a trolley, the hospital orderly is all smiles and flashes of white teeth as we speed downstairs to the operating room. I hate being separated from Stew at this point – I feel isolated and lonely lying outside the theatre waiting for the anaesthetist. I try and centre myself – I know we are having a boy and that his name will be Zack. I try to talk to him and prepare for what’s coming, my head still fuzzy from the pethidine.

Several moments later I am re-united with Stew. I am given a spinal block and then laid out flat on an operating table. With both arms outstretched attached to monitoring equipment and IV lines I look like I’m being crucified. Dr B is reassuring as she makes the initial incision. My legs are dead weight and I feel no pain just a strange sense of tugging. I have been in active labour now for sixteen hours and I’m desperate for this to be over. The procedure is so amazingly quick; about ten minutes after the spinal block Dr B tells us to get ready. The anaesthetist, a friendly grandfatherly type with a pair of bushy grey eyebrows, pushes down on my chest while Dr B reaches in and pulls Zack out of the womb and into the bright glare of the overhead lights.

We have anticipated this moment for so long and yet his arrival is a shock. I cannot quite grasp or comprehend the meaning of this moment. At the point where he lets


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out his first wail as skin comes into contact with cold air for the first time and his eyes are assaulted by bright lights, so the movie of his life begins. He is held up for us to see. Omigod, Omigod! He is breathtaking. He is so beautifully plump and so very blonde. He is spirited away by the paediatrician for examination.

At around this point I begin to unexpectedly bleed. Stew looks on horrified as a pool of blood forms on the floor the size of a saucer then a dinner plate. I feel like I am being pulled under water as the medical staff work to staunch the bleeding. Drifting in and out of consciousness my eyes dart around the room until they land on my beautiful son. He is now in Stew’s arms. The paediatrician detects a heart murmur but assures us that this is probably nothing to worry about. He has been given a good Apgar score and Stew is smiling broadly. I notice he is dry eyed. I know my husband well. The events of the past few hours have been too stressful to allow him to let his guard down. Always the protector, he is being controlled, vigilant. He will cry later when it is safe or perhaps not at all.

It is Thursday and the rest of the day I drift in and out of sleep. My mind whether waking or sleeping alights continually on the vision of the baby boy I have just been given.

*Friday is a happy day. The room begins to fill with flowers and visitors. I am high as a kite on painkillers and luxuriating in the feeling of having just passed a huge life hurdle with flying colours. Zack is examined by


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Dr G, our paediatrician, who tells me that the murmur is much softer today than yesterday, he assures me that the chances are that this is merely an ‘innocent’ or ‘flow’ murmur and hence nothing to worry about. I happily field calls all day on my cell phone in between sleeping and gazing at my beautiful newborn son. He seems so perfect; plump and robust and although dozy like all newborns, when he does open his eyes they lock into mine immediately in a manner that I find reassuring and soothing.

When Saturday dawns, I open my eyes and try to bat away a mysterious feeling of apprehension that lingers as I wake up. Months later my mother will tell me that her feelings of euphoria suddenly evaporated on the same Saturday morning while she was shopping in Checkers. I am more awake today then yesterday and perhaps it’s the effect of the medication wearing off but I feel slightly subdued and can’t dispel this morning’s sense of anxiety.

In the evening Stew brings his sons from his first marriage; Dylan and Travis to meet their baby brother. Dylan is sixteen and full of teenage angst and extreme awkwardness. He is a true carrot-top. Handsome like his father, he is prone to brooding and likes to keep his own counsel. Relations between Stewart and his ex-wife Tracy are acrimonious and I can sense that the arrival of our baby is rather bewildering to his two boys. When Stew hands baby Zack to Dylan to hold I can sense Dylan’s acute discomfort. Travis on the other hand, eleven, blond and stocky, is still imbued with childlike exuberance and excitement.

My own relationship with Tracy is extremely strained. Stew senses that this visit is a little difficult for his two


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older sons and he takes them home before visiting hour is up.

I am left with just Zack in the room next to me, he is sleeping soundly, perhaps a little too soundly. After flipping through a few channels I fall asleep. It is around midnight when I have the dream. I come to consciousness with a sudden jerk. Perhaps it is the pain medication but my mind is besieged with fuzzy horrifying images. This is a nightmare unlike any I’ve ever had. The dream itself is formless and I can’t grasp the images fleeing my mind as I wake up. All I am left with is a heart-stopping all-enveloping feeling of horror and dread. I wake up fully but the feeling of dread doesn’t leave me. Holding my Caesar scar I sit up tentatively and look at Zack sleeping next to me. The horrible images seem to intensify if I look at him. Omigod something is wrong with my baby! I know it. I pick him up. Am I imagining it or is he quieter than before? He responds rather lethargically when I try to rouse him. Trying to fight off panic I gingerly haul myself out of bed and begin the long walk down the hall to the nursery wheeling Zack in his little bassinet.

At the nursery I immediately go to the nurses’ station. I tell them I think something is wrong with my baby. The nurses give Zack a cursory once over and try to reassure me that he is fine. I want to believe them so foolishly I do. All the euphoria of the past few days is beginning to rub off. I trundle back to my room and fall into an uneasy and fitful sleep.


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Chapter 2

When i aWake on sunday morning the rain has lifted but not my mood. The blood loss I suffered during the Caesarean is catching up with me and I feel incredibly weak. My breasts feel like rocks and I am hit with the full force of the baby blues. I am taking my baby home today and I feel weepy and overwhelmed, and so, so tired. At around nine o’clock Dr G, our paediatrician, arrives to check Zack over and give us the okay to return home. I am cleaning up the detritus of four days of hospital stay, stuffing clothes, nappies, wipes and cards into my tiny overnight bag. The room is like a train station; nurses are clearing the breakfast trays, someone is trying to sell their audiology services and I’m trying to fill in the birth certificate forms while I pack. Dr G is leaning over Zack with his stethoscope. Something in his manner alerts me. He is a tall man and his face registers concern. An eternity passes and he is still listening to Zack’s chest. He turns up and looks at me.

“The murmur is much louder today than yesterday.” He shakes his head and says almost to himself. “Much louder. This baby needs to be taken up to Neo-natal ICU.”

“Can we just wait until my husband arrives?” I ask, “He’ll be here any moment.”


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Dr G rejects my request politely but firmly. “No this baby must go to ICU at once,” he says.

Within two minutes ICU staff have arrived. They whisk Zack away moving quickly and with real urgency. A sense of panic begins to rise – it’s physical – I can feel a tightening of my chest and my throat. I get on the phone to Stew, he is on his way already with Travis in tow. Stew arrives to find me tearful and confused. We aren’t allowed to see Zack, we are told they are trying to stabilise him upstairs. We’re in limbo now – I have to vacate my room by ten o’clock and I’ve got nowhere to put all my stuff. Travis helps Stew to pack all the flowers and extras into the car.

My cousin’s lovely wife Mandy arrives at the hospital and takes Travis home to his mom in Roodepoort. Stew and I then take the lift upstairs to NNICU. Access to ICU is strictly controlled and we ring the bell and ask the nurse for Dr G. He greets us at the door and makes it clear that we cannot see Zack yet. Across the room I get a brief glimpse of Dr D for the first time. From this point on this humble and wonderful doctor will play such a pivotal role in our lives. An unassuming looking man with large spectacles, he is staring intently at a screen above Zack’s bed. This is Dr D a renowned paediatric cardiologist from Sunninghill Hospital. He has been called out on a Sunday morning and we begin to realise how serious this must be.

The staff lead us to a small airless waiting area – it’s really nothing but a corridor with a few chairs. There Stew and I wait, and wait. Stew is always one to remain positive in the face of adversity, he stands nervously kicking a pillar and suggests that maybe they are just


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being cautious and we’ll still take him home today. As he says it I know that he doesn’t believe it, he is saying it for my benefit. The longer we wait the worse we feel.

Eventually Dr G arrives. He sits down opposite the two of us – he has a solemn expression. He begins speaking, his tone serious but empathic. He tells us that there is no doubt that Zack has congenital heart defect and this is where the murmur is coming from. As it turns out there is nothing innocent about this murmur at all. There appear to be several defects the full extent of which is not yet known – further tests will be necessary.

“What are his chances?” Stew asks. I am horrified. Don’t ask that! I want to scream. Dr G

won’t be drawn in, it’s basically too early to tell. “Your child will definitely require surgery.” He says.

“Cardiac surgery is carried out at Sunninghill, he will be moved there once he is stable and a bed is available.”

Stew amazes me – he is able to keep his composure in the most excruciating circumstances. He stays engaged with the doctor asking relevant questions, remaining optimistic. I say nothing. My head is in my hands and tears are falling through my fingers.

Dr G assures us that our son’s case is not hopeless and that all steps that need to be taken in a case such as ours are already being done. Dr G is straight with us. He won’t be drawn into making predictions about Zack’s chances – it’s too early to tell. It’s terrible news to hear and it must be awful to have to deliver it. Dr G does so with a warmth and compassion I will never forget.

I wander downstairs to the maternity ward. My room is vacated and so I trundle my suitcase towards an empty ward. Stew is on the phone letting his brothers and sisters


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know what is going on. I feel sick, the blood loss is now getting to me, I am nauseous and every step I take feels like I’m wading through thick mud. I don’t want to sit or lie down. I don’t know what to do with the news I have just heard. I can’t integrate it – it’s like there just isn’t any room for this terrifying new reality inside me. An overwhelming sense of panic and dread is building and I can’t contain it. I feel like I am spilling over the side. I am wandering around the maternity ward in a daze.

A nurse spots me and leaps up from the nursing station. She grabs me and leads me to an empty room on the ward where I collapse on a chair. Her strong arms are around me, holding me, containing me. My body heaves with great choking sobs. I open my mouth and it’s like a lava fall.

“It’s not heart failure.” She tries to reassure me. “Dr D is a very good doctor. He is the best. Remember your baby is in the best possible hands.”

I pull out my cell. We had an agreement that we’d wait and see how we

were coping with the baby before my mom came up from Durban. In hindsight this arrangement was silly. Why wouldn’t I need my mom straight after the birth of my first child? I dial the familiar numbers, as if by instinct my mom picks up on the first ring. As I tell her the news my composure breaks. My mom tells me she will fly up on the first available flight.

*It is about four-thirty in the afternoon when I see her. I am lying on a bed next to a window in the day ward


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feeling exhausted but I am too nauseous and strung out to sleep. The bad weather has returned, it is raining incessantly outside and the Sandton skyline is barely visible through the mist. I lift my head up off the starched white pillow and looking through my swollen ankles I see my mom standing in the doorway to the ward. A great wave of relief washes over me. Mother, Mom. I called for you and you came.

She comes and stands next to my bed. For a moment the mantle of motherhood is lifted and I relax into my old role, that of dependant child. I want to drink in her presence and not let her go, hoping with childlike trust that perhaps her presence alone may force this unfolding nightmare to retreat.

A former nurse and a damn good one, she comments immediately on my bad colour, examines my fingernails and under my eyelids and confirms my doctor’s diagnosis of anaemia. My mother has a strong lively voice and a Canadian accent that is as bright as the day we all left Canada in 1978. When she talks people tend to stop what they are doing and listen.

Mom pulls up a chair next to me and I tell her that we have not seen Zack since this morning and that they are still stabilising him in NNICU. Mom lays a hand on my arm. There are age spots the size of fifty-cent pieces and I notice that her fingers are beginning to bend slightly in a manner that suggests arthritis. Regrettably I am reminded that Mom is no longer young. Still I console myself that at seventy-one she has enough vigour to hop on a plane and be with me when I need her most.

It helps that my mom has an inside knowledge of how hospitals work. She manages to wangle me some nausea


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meds and I am given iron to treat the anaemia. The rest of the day passes in an anxious blur. Stew returns to the hospital and we wait for news on Zack’s condition.

It’s only in the evening visiting hour that we are eventually allowed upstairs to NNICU to visit Zack. Feeling completely ridiculous I am wheeled up in a wheelchair. The anaemia is making me feel so wretched that I can’t summon the strength to walk. I hate having attention drawn to myself in that way; I feel like a character in a bad country-and-western song.

Sandton Clinic has a large and impressive Neo-natal ICU. Under the bright lights myself, my mother and Stew make our way to Zack’s bassinet. This is the first time Mom has seen her grandson. Zack is unconscious; a ventilator is breathing for him, he has a dizzying number of lines going in and out of his little body. I look at my little boy – just a few days ago he was so safe inside me. I wish I could take him back to the womb where I know I can sustain him and protect him. In the harsh glare of the neon lights he looks so terribly, terribly fragile.

Mom stands over him and I notice her drinking in every detail of her tiny newborn grandson. To my astonishment a beautiful smile breaks out across her face.

“Oh Nads,” she says, her pride evident, “he’s beautiful.”

It is a moment that I will replay many times in my mind. Never, ever have I been so grateful for my mom’s presence. My emotional stability feels so tenuous that I think if my mom freaks out or gives in to her own distress I will fly into a million tiny pieces. My mother’s composure begins to encourage me. I stand up and gaze


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at Zack. He is still, despite all the intravenous lines and machinery, a beautiful bonny baby boy.

Like many newborns he is jaundiced and he has been placed under UV lights. He is wearing little cardboard sunglasses that make him look like a tiny rock star. He is a big baby with a lovely crown of downy blonde hair and beneath his still eyelids are the most gorgeous blue eyes. I stroke his head and hold one chubby hand in mine. I begin to take in his presence; he is still my baby. Momentarily I am able to look beyond all the medical equipment and I catch a fleeting glimpse of a healthy Zack. In my mind’s eye his medical condition is held at bay and I sense the breathtaking beauty and spirit of my precious child.

Mom and Stew go home that night but I room-in at the hospital. After the most traumatic day of my life I finally fall into a dead and dreamless sleep.

*


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“Let me feel!” my voice is getting urgent. Letmefeel letemefeel letmefeeeeeeeeeeeel! I am jumping up and down. A soft, warm Canadian summer’s afternoon. We are near the lake. Louise, my big sister, is twelve and she has braces on her teeth, not railroad tracks like my brother’s friend Felix but a single line of metal. It’s known as a retainer and she knows things. I am only five, scrawny like my brother with a tangled pony tail of dark blonde hair.

“You can feel your heart right here.” She has her one hand on the inside of her wrist.

“And here…” she quickly takes her hand off her wrist and moves it to the side of her neck, just under her chin.

“It’s your heart beat.” That’s my brother David only we call him Davey. He is nine and has a thick mop of brown hair and dark blue eyes.

“When it stops beating you DIE.” He says this with wide eyes knowing damn

well it will scare the hell out of me. It does. My sister takes my hand, isolates the three middle fingers and places them on the inside of my wrist. At first I feel nothing. Then I concentrate. My entire body is still, you can hear the sound of bees buzzing in the milkweeds, a boat engine coughs to life on the river and then I feel it; soft like a butterfly beating its wings. My pulse, the feeling of my own heart beating.

I lie awake that night. Anxious as always. Anxious child. What if my heart stops beating? I ask myself. How does it know not to stop? When


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it stops you die. Davey’s words. Only now he is sleeping contently in the bed under the window across the room we share in Nana’s cottage. My hand moves up towards my chest where I can feel my heart. It knocks reassuringly against my ribcage with a steady comforting rhythm. The rhythm of life itself.


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Chapter 3

i room-in at sandton CliniC for one more night. The iron tablets are working and I start to feel somewhat better physically. The rainy weather continues and the reality of what is happening to us begins to sink in. Visiting hours in intensive care units are very strict even for parents. We visit Zack three times a day and the rest of the day is tortuous, anxious and empty. To the side of the NNICU are a couple of private cubicles. I notice a small boy occupies one of them, he has a trachy tube in his throat and he is looking at a picture book. There are pictures on the walls of his little room and a collection of teddy bears on his bed. His mother is always in ICU when I am there. A very attractive woman, casually elegant she never fails to greet me in a warm and friendly manner. On the third morning that Zack is in ICU I notice she is crying. I work up the courage to introduce myself.

“How old is your child?” I ask a bit clumsily, “when are you taking him home?”

“He’s three,” she tells me flatly. “And he doesn’t come home very often.”

Her words hang in the air. I feel awkward for having asked and for having intruded into her private hell, and


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I am clueless as to what to offer in response. More than anything her words scare me – Could this be what is in store for us? Never ending torment, living in ICU?

I shut my mind to this possibility. Zack is going to be well. I tell myself I can will it so. I will put one foot in front of the other until this nightmare is over. Will it ever be over? I try to banish the thought. We are still largely in the dark about Zack’s condition. We know that his cardiac defect is substantial and we are told that he will have to be moved to Sunninghill Hospital that is home to the Paediatric cardiac unit. We are also told that they need to stabilise Zack first and there are logistical issues to sort out; there must be a bed available at Sunninghill and transport will have to be arranged.

On Wednesday afternoon I finally go home. Stew picks me up in his Audi and I notice the baby seat is no longer in the back. We say little to each other on the drive home to Parkhurst. It is so strange to come home to our little house with its wrap around lavender hedges. I love my home. Stew bought it the year before we were married. It was a modest rather dilapidated post-war bungalow with twirly burglar guards, rotting carpets and a nineteen forties kitchen. We renovated it completely to make a contemporary stylish little house that we both love.

I walk inside and I’m overcome with the strangest sensation. My house seems oddly different. I go slowly from room to room running my hands over surfaces and taking in the familiar. Yet it’s as if in my five-day absence things have been imperceptibly, mysteriously altered. It’s as if my home, my safe haven, has been somehow distorted. Has my house changed? I ask. Or


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have I undergone such a transformation that is it me who is distorted?

I walk into the dining room and I see the flowers; bunches and bunches of them. You can hardly see the dining room table for flower arrangements; roses, daisies and pansies. Cards pop out of the posies “It’s a boy” cute cards proclaim happily. This is not how it is supposed to be. Zackie you are supposed to be here with us. I say to myself. I then do what I know I must. I open the door to Zack’s room and go inside. I sit down on a double bed opposite his camp cot. I reach into my handbag and take out a little pair of his socks. The nurses in ICU gave them to me several days ago. I notice that one sock is stained with blood, no doubt a side effect of the installation of another invasive procedure. I stare at the bloody socks and I’m overcome with sadness, with worry, with longing. I look around Zack’s room and ask myself why I didn’t make it nicer. The room looks rather bland and I reproach myself for not having made more of an effort at decorating. I hold the socks to my face, close my eyes and inhale the faint traces of Zack’s smell. Eventually I replace the socks in my handbag where they will stay for weeks and weeks.

*We go to the hospital early; it is a bright sunny Thursday morning. Zack is being moved to Sunninghill Hospital in the far north of Johannesburg. This means we will have much further to travel at visiting times. We are incredibly anxious. I like the staff here at Sandton and I understand the routine. Zack is just one week old but already our


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lives have changed entirely. I feel as though I have been catapulted into some crazy parallel universe – while the rest of the world gets on with its business I am now on another planet. My life is taking on a bizarre quality. I express milk, take it to NNICU and stand next to Zack during visiting hours doing nothing useful. I chat nervously and sporadically to the nurses – I am afraid to find out too much about Zack’s condition.

Other parents react differently. They ask the staff pointed questions, they want to know precisely how many mls did their child drink last night? Why is their baby back on such and such a medication? I am too afraid to be direct and forthright. I am meeting this trauma side on – it’s like when you watch a horror movie through your fingers – I am trying to take in the fear in manageable chunks. I approach the staff tentatively. I want to coax reassurances out of them but I am afraid they will give me bad news instead so I stand next to my child and say very little.

I have managed in the last few days to grab hold of some kind of a routine. At least at Sandton I know how to get there, where to park. I understand the workings of the milk system, the visiting hours. Now the world is being turned upside down again and I feel incredibly shaky.

At about 9am the ambulance arrives with paramedics. The ambulance is escorted by a car with flashing lights and we are to follow behind. We see Zack in his tiny incubator with his oxygen supply being wheeled into the ambulance. Stew and I follow the ambulance as it makes its way to Sunninghill. It is a place I have never even visited.


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Sunninghill is a much bigger hospital than Sandton Clinic and home to a number of specialist units. It is famous for its Paediatric Cardiac ICU. Allied to the cardiac unit is The Walter Sisulu Paediatric Cardiac Foundation which, through its fundraising, performs hundreds of essential cardiac surgeries on children throughout Africa. Madiba is its patron and he named the unit after his great friend and struggle stalwart Walter Sisulu. In most of Africa there are no facilities for paediatric cardiac surgery. The WSPCF is the only unit of its kind attempting to address this.

The Neo-natal ICU (NNICU) is smaller than the one in Sandton and is crowded to the point where Zack and several other babies are in a room next door to ICU. When we go in to see him he is in a bassinet hooked up in an identical manner to the way he was in Sandton. His nurse is Sister Promise. Her English skills are poor and I struggle to communicate with her.

“How is he doing?” I ask. “Not so well,” she states flatly. I can’t believe what I

am hearing.“What’s wrong with him?” I can hear the panic rising

in my voice. “He will be better tomorrow, you’ll see,” she says in

an infuriatingly offhand manner. She clumsily begins to put the nasal gastric tube into

Zack’s delicate nostril. She is rough and cack handed and I cannot bear to watch. I don’t know what to do with myself. Today is turning into a rough day. We haven’t heard from Dr D yet and now we are told Zack is struggling. We don’t know when he is scheduled for surgery.


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Dr D visits in the afternoon. Zack is breathing harder – which shows he is straining. The move has stressed him and it is heartbreaking to see him grunting when he should be sleeping the peaceful undisturbed sleep of a newborn. We learn that Zack is to be operated on by Dr K and his partner Dr C. This is the first time that I have heard of Dr K who heads up the paediatric cardiac team. We are assured that they are the finest in the country. Given Zack’s current condition Dr D will have to decide whether he is strong enough to undergo surgery tomorrow morning or if we should wait the weekend out and go in on Monday morning. At this point we are told that Zack’s heart will be corrected in two stages – an operation followed by another surgery when he is about six months old. The thought fills me with heaviness – one big hurdle to be followed by another.

We return home that night to Parkhurst too exhausted to visit that evening.

The weekend that follows is a tense one. Zack rallies on Friday morning and appears to be breathing somewhat easier. Dr D assures us that Zack is not going into heart failure. He is moved into NNICU proper and I start to get the hang of the new ward. I continue the lonely task of expressing milk every night and bringing it to the ward every morning. We begin to adjust to the new longer drive, the new staff and the new routines at Sunninghill.

On Sunday evening Stew and I meet with the surgical team that will operate on Zack. Dr K has decided to repair Zack’s heart in one go. The surgeons will have to go in and repair the two holes in his heart; they will have to correct a severe and complex co-arctation


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(restriction) of his aorta and mend an abnormality that is causing a further restriction beneath his aortic valve. This is what is referred to as a complex congenital heart defect. No one is glossing over the fact this is going to be a marathon operation. Dr K estimates it will take about six hours.

The surgical team is very direct with us. Zack has no chance without this surgery. They inform us of the risks; Zack’s body will be cooled in order to prevent damage to heart tissue and he will be given medication to counteract this cooling effect on his brain. We are warned however that this cooling procedure carries with it a risk of permanent brain damage. The risk is only a slight one but the introduction of yet another worry leaves us both feeling pretty deflated. Stew and I have to sign consent forms for an HIV test and the other preliminary blood work. There is an air of negative excitement; what is going to transpire tomorrow is momentous, but so frightening. Zack is going to have open-heart surgery. It is a lengthy and invasive procedure. during which a massive heart lung machine will take over from his own heart and lungs. The heart will be packed with ice and surrounded in cotton wool and then Dr K and his team will work quickly but carefully to repair his damaged heart.

Dr K is a world-renowned cardio thoracic surgeon. If you live in Johannesburg and you’ve had a heart problem there’s a good chance that Dr K has worked on your heart. We are incredibly lucky with Dr K and Dr C and are in unbelievably good hands – we are playing with the A team. Thank God we have the means for a top-level medical aid. These types of medical super specialists


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don’t come cheap. The average cost of an operation such as the one Zack is facing is around a hundred and fifty thousand rand. A sum far beyond the reach of most people on this continent. Dr K and his team are not sentimental. They are not telling us that everything will be fine. This is big surgery for a tiny baby. Zack’s condition is a complex one and there are risks involved. We have no choice but to go through this door.

After our discussions with the surgical team are finished Stew and I say goodnight to our sleeping son. I am so glad that he has no inkling of the ordeal to come. A friendly nurse from Neo-natal ICU offers to give us a tour of Cardio Thoracic ICU. A middle-aged lady with fly-away brown hair she chats away about nothing in particular. I am grateful for her chatter as we enter CTICU, which is located in the basement of the hospital.

At first glance CTICU is a forbidding place. About thirty to forty patients are placed on beds beneath impressive banks of monitoring equipment. Each bed is at least one metre from the wall – they are so spaced in order to allow a resuscitation team space to get in behind a patient in an instant. It is a harsh reminder of just how cutting edge this place is and of what our son is facing. The nursing here is one on one and the place is bathed in neon day and night. All patients are visible to the staff at all times; almost all seem to be unconscious. The place scares us into silence. We thank the nurse for taking time out for us but are keen to leave. We drive home saying little to one another.


Mending a Broken Heary

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