‘You have an increased risk of having a child with Down syndrome,’ the technician told us flatly. When Graeme and I first decided to grow our family, we were determined to have one low impact child. That was just the way it was going to be. Our lives were packed full of sailing, scuba diving, camping and four-wheel-driving adventures, and we didn’t want to give up any of that. So we simply wouldn’t.
Over a coffee that couldn’t melt the lump in my throat, we discussed our options. Do nothing, and let nature takes its course. Or I could undergo a diagnostic procedure: either an amniocentesis which could not happen until I was several weeks further into the pregnancy, or a CVS which could happen much sooner. Our decision was easy: CVS. It could be done within a week, and the risk of complications (miscarriage) was less than the risk of having a child with a chromosome abnormality. What about the results? Well, that was easy too. A child with Down syndrome would not be low impact. Frankly, the thought was alien and terrifying.
A chorionic villus sampling (CVS) involves passing a fine needle through the abdomen into the developing placenta and withdrawing a few tiny fragments of the tissue into a syringe. The placental tissue contains the baby’s complete genetic information. The sample is then sent off to a laboratory for testing and initial results are available within two days.
The day of my CVS test is a bit of a blur. I remember driving myself to the clinic and feeling very conspicuous as the only pregnant woman in the waiting room without a ‘significant other’. I recall a nurse asking me if my husband was going to be driving me home as I might feel woozy after the procedure. When it was my turn, I was scared they were going to hit the baby with the needle, or hit something else, or take too much placental tissue. I can still remember the pulling ache as the needle went through the deep layers.
Afterwards, as I drove myself home, I cried that Graeme hadn’t been there with me.
The CVS came back clear. No genetic abnormalities detected. We congratulated ourselves and prepared for our low impact child.
My pregnancy couldn’t have been rosier. No morning sickness. Life went on as normal, with all the adventures we could squeeze in outside our demanding jobs. I kept my pregnancy a secret at work for as long as possible, and followed an online calendar that told me how my baby was growing. I felt my body changing. We started taking photos of my bump, which didn’t appear until about 17 weeks. From early on I was convinced I was having a boy.
At twenty-three weeks my blood pressure shot up. Immediate hospitalisation. (‘No, you don’t have time to go back to work. Go straight home, pack a bag, and admit yourself’, said my specialist.) I was diagnosed with pre-eclampsia – it seemed my body was rioting against the alien thing inside me. I was given blood pressure medications that gave me screaming headaches and forced the contents of my stomach halfway across the room. I underwent blood tests and scans and ultrasounds. Surely I would be discharged once they sorted my medication – after the weekend at least? I had so much to do!
Pre-eclampsia is a condition which occurs only in pregnancy. The illness is quite common and occurs in about ten percent of pregnancies, but usually it is easily managed. It causes elevated blood pressure, swelling, and disturbed kidney functioning. In about one percent of pregnancies, pre-eclampsia can become so severe that it can threaten the life of the mother and the unborn baby. The illness starts to affect the mother’s other organs, such as the liver, heart, lungs, brain and blood clotting system, and as the illness progresses, the placenta stops working properly and the baby starts to stress. The only cure is for the baby to be delivered, regardless of the stage of the pregnancy. I knew none of this. In my ignorance, I believed they would find the right medication and send me home.
I lay in a private room in the maternity ward of the San Hospital, listening to babies cry and families gathering in nearby rooms, delivering baskets of pink/blue flowers, teddy bears and balloons, celebrating new life. Later, I was wheeled upstairs to a birthing room where they hooked me up intravenously to a blood pressure drug, and I listened to a woman in the throes of labour as I watched milky liquid dripping from a clear bag into my vein.
My obstetrician, Dr Paul, came and gravely told me that I couldn’t have my baby here. They didn’t have the facilities to deal with premature babies. I didn’t know what he was talking about. I couldn’t have my baby yet, I was only in my twenty third week. I was going home soon, right? There were people I worked with, played with, that didn’t even know I was pregnant! ‘Your baby is going to come early,’ he told me. ‘I want to move you to North Shore.’
My perfect pregnancy was over. My dreams/illusions of the perfect nine months, the perfect birth, and the low-impact baby, were like flower petals (pink/blue) crushed under heavy shoes.
Ten years is a long time to avoid something. For ten years I have avoided revisiting the birth of my son. That rollercoaster ride was something I wasn’t sure I’d ever be able to relive. I’d recounted the story probably a hundred times – and managed to stay on top of my emotions with more strength at each telling, but re-reading my journals, the letters to my son, the records of everything that happened to him (and us) through his disaster-fraught journey – that wasn’t something I could do. They stayed on my bookshelf, three unassuming little books, firmly closed and easily evaded as life wrapped its inevitable tendrils about us and carried us along and away from that dark and traumatic time. Those journals stayed on my bookshelf until November, 2012.
Before I had you, before there was any fear, I had a dream. I dreamt I’d given birth to you and I was wandering through a hospital, searching for you. I found myself in a room where everyone was dressed in finery as if for a ball, while I was in a hospital gown. I kept asking people where I could find you, but nobody knew; they just kept shaking their heads at me. I ran through rooms in a panic, screaming out ‘Where’s my baby?’ Does every pregnant woman have dreams about losing her baby? Or was I dreaming the future? When you were born, I didn’t even get to see you until the next day. They brought a couple of Polaroids to my room. What was in those photos didn’t match up with anything in my mind. The images showed something that looked like a skinned rabbit – all shiny and raw pink, face obscured by breathing apparatus, leads and tapes and probes everywhere. They told me that was my baby. Who cleaned you? Who whispered gentle words to you? Who held you that first time?
Every morning a troupe of medical staff would crowd into my room and discuss my condition as if I wasn’t there. I was confined to a private room in the high-risk section of the maternity ward; the goal to keep my baby inside for as long as possible. They trialled me on different medications, checked my blood pressure every couple of hours, and did regular scans on my belly. I held a small device, and each time I felt the baby move I had to click the button. They took blood until the inside of my elbows was pricked raw. My thighs were covered in green bruises from the daily injection of heparin. Each day, I would be allowed out of my room for the short walk down the hallway to the scales. I couldn’t see the fluid under my skin when I looked in the mirror, but when I got out of bed it would seep down my legs, and my feet would swell and spread out sideways like a frog’s. It was only later, in photos, that I could see how puffed up I was, how sick I looked.
During the long nights, I turned to my mother’s God. My journal at this time is full of prayers, pleading and promises. I thought that if I prayed hard enough, everything would work out fine. On the phone, my mother would talk about her prayer circle and assure me that God had a special plan for us. I didn’t care about a special plan. All I wanted was to carry my baby as long as possible.
Family and friends came and went. I was given flowers and gifts. The flowers gave me headaches and had to be sent away. Graeme was with me as often as possible, trying to keep my spirits up, trying to keep my mind off the ‘what ifs’. Others weren’t really sure how to deal with me, being unfamiliar with such an illness. The days slowly went past in a haze of anxiety and tedium. Was I being punished for ordering a low impact baby, the perfect nine months?
One Monday night, Graeme and I were taken on a special guided tour of the Neonatal Intensive Care Unit. My journal reports no more than, ‘Tiny babies! I found it difficult to breath,’ but I remember the shock of the machinery, the noises, the medical paraphernalia, and amongst all that, the tiniest, most helpless babies I had ever seen.
My journal deteriorates with my condition. Some entries are only a few lines long or end mid-sentence. I lost track of the days. I tried doing cross-stitch, writing letters. I had Graeme bring in my study materials, but the readings had become nonsensical and I soon gave up. The witches’ brew of drugs mesmerised me and dulled my thoughts.
And then everything changed. My test results showed that my kidneys and liver were shutting down, and the baby was showing signs of distress. Fourteen weeks before my due date, I was whisked away for an emergency caesarean, which was one of the most frightening and painful things I have undergone. It was decided I would have to go under general anaesthetic, but to reduce the risks they wouldn’t put me under until the last possible moment. I had a drip put in, and was made to drink some foul liquid while a nurse held her fingers on my throat so I wouldn’t vomit. I was lifted onto a hard table and a wedge was shoved under my hip. A nurse put in a catheter while a registrar butchered the job of inserting some sort of monitor into my wrist. (I bore a multi coloured bruise for months) Finally, they put me out.
And Jamie was born.
When I opened my eyes, your daddy was leaning over me. ‘We have a son, and he’s OK’, was all he said to me before I let darkness claim me again, but that’s all I had needed to know. It was sixteen hours before they let me see you. First I had to eat something, and get out of bed, and have a shower. Each thing I did was one step closer to our first visit. Your Aunty Ricki arrived on a very early flight, and Daddy came back too. Their presence gave me strength and courage. I remember the effort of just getting up, and in the shower I shook with pain and fatigue. They made me walk to you, although I know of other new mums who were wheeled into the NICU in their beds.
Later, Ricki and I stood by Jamie’s humidicrib. ‘He’s so sick,’ I remember saying to her.
‘He’s not sick,’ she responded, ‘he’s just small.’ But he was sick, dreadfully, heartbreakingly sick.
A few days after his birth, my journal entries suddenly cease for two months. These were the most frightening days. The days of not knowing. The days when we had to make impossible decisions. The days of preparing ourselves for the worst, only to suddenly be buoyed up by some tiny bubble of hope. It wasn’t just a rollercoaster. It was the rollercoaster, the ghost train and the house of horrors rolled into one, and we had unlimited rides.
I ‘surrendered to the terrible possibilities of loving too deeply’. Some mothers, when their babies are born prematurely, become detached and avoid bonding. They are so afraid of losing their tiny, fragile baby that they draw back and withhold their love. This wasn’t the case with me. From long before he was ever born, I loved him fiercely. And once he was born, I wore my heart on the outside of my body. I didn’t even know there was an option. And even though that tiny, silent creature looked like something that couldn’t possibly survive; I wore hope like a badge. I had to have hope, or my grief would overwhelm me.
I wasn’t expecting grief, but after love, it was the strongest emotion I knew. I grieved for my lost pregnancy and resented women getting about with bulging bellies and distended belly buttons. God forbid they complain about it. I grieved for my son’s horrifying start to life and the many months of sickness and discomfort he would suffer. I grieved that my body had let me down and I hadn’t been able to give my husband a healthy child. It is a phrase we hear often; ‘I don’t care what I have, as long as it’s healthy’. Even that was asking too much. When I hear that phrase now, I think of my tiny Jamie covered in splints and bandages and cannulas and monitor probes, his tiny hands scarred from pinprick blood tests, a tube down his nose and another in his mouth.
All your visitors smile at you, at us, with their mouths, but their eyes are full of sorrow and confusion. Your grandparents are the worst. In the photos they all look shell shocked, like they’ve just seen the saddest thing and then had someone shove a camera in their face. They smile dutifully for photos with the new grandchild that they can’t even touch.
I couldn’t hold you for a month, you were so fragile. When I finally did, they swathed you in flannelette until only your face was showing, and you were so light it seemed I was holding nothing but a bundle of rags. But to finally hold you! I was at the top of the rollercoaster, arms raised and screaming in exhilaration.
I would never have the perfect nine months, but I cherish every perfect moment.
The quotation ‘I surrendered…’ is from Rachel Ward’s essay ‘Milk Fever’, published in Mother Love, edited by Debora Adelaide. Random House Australia 2006
De Crespigny,L., and Chervenak, F.A. (2006) Prenatal Tests: The facts, Oxford University Press, Oxford, New York
Stanfield-Porter, R. (2009) Small Miracles: coping with infertility, miscarriage, stillbirth and premature birth, Hachette Australia.
Ward, R. (1996). Milk Fever. Mother Love. D. Adelaide. Milson’s Point, Random House, Australia: 97.
Whelan, M. (2008), The Other Country: A Father’s Journey with Autism, Pan Macmillan, Sydney, Australia
NSW Health Publication (2006): Outcomes for Premature Babies in NSW and ACT, NSW Pregnancy and Newborn Services Network (PSN).