Paris on a Prayer: the Dylan Groom Story

PART ONE

There are always such high expectations in a mother’s mind at a time like this, I thought to myself, staring at the patchy walls. Pieces of wallpaper still hung by threads, tempting me to heave myself up off the comfort of the couch and complete the task at hand.

It had been another long day entertaining our three young children, as it was school holidays. They, like us, were becoming excited about the child stirring within me.

I can still see myself: sitting on the couch, lukewarm tea resting on my swollen stomach, watching the children protest about bedtime. Jessica, our only girl and eldest at six years, walked towards me, regular as clockwork, and bent to kiss my tight, expanded stomach. “Goodnight baby, love you,” she said, then happily skipped to bed, secretly wishing for a sister.

As I sat there, making a secret wish of my own – Stay where you are, baby, just a little while longer, the walls aren’t freshly decorated yet – our baby’s waters leaked onto the couch. Time hung in mid-air. Seeing my anguished face, Michael used lots of sign language before ushering the children more hurriedly down the hall to bed, leaving me alone with my panicked thoughts.

Having been through this three times before, I was sure he knew what was needed. I tried to stand, but leaving the cocoon of the couch only seemed to make matters worse. More water leaked, more towels were needed. I made a distress call to my mother to babysit the children. The next call was to my midwife.

Before long we were in the birthing room at Waikato Hospital, my stomach wired to catch the sounds and movements of our baby. For a short time, I relaxed in my new surroundings. Michael had duly fallen asleep beside me. More walls to contemplate!

Dylan Francis Groom was born at 5:58am on 12 May 1993, to the soft sounds of Bach. As dawn broke on this wondrous day, Dylan and I set up our temporary home in a four-bed room in Ward 53.

The first visitors of the day were Michael and the children. Jessica, as always, brought a poem; this one was about how Daddy had told her she was our one and only princess, now she had three brothers, and this made her special, which made her happy. Kissing Dylan’s head she said, “Hello baby, I have been loving you.”

Later, in the early evening, I was lying back on my pillow, thinking of the children who would now be at home. I felt their absence; just hours before they had been sitting here with me enjoying their new brother. That’s when I heard Dylan’s cry from his cot. I took my time in attending to him, silently wishing him asleep, as his first twenty-four hours in this world had been far from restful.

The nurse, who happened to be in our ward at that moment, saw the exhaustion in my eyes and assured me she would see to Dylan. I should lie back and rest. She went to pick Dylan up, and as she did we both saw him. Blue – still crying, but blue. With the speed that comes from experience, the nurse raced down the corridor holding Dylan close to her.

Your mind doesn’t work at a time like this. It is a time when you leave one world behind, unaware it will never be quite the same again. It’s a time when the pure survival instincts of a mother surface. My feet found the ground and I too sped down the corridor, shadowing the nurse’s footsteps. By the time I reached her, she was in the nursery where Dylan had an oxygen mask over his nose and mouth. A close friend arrived at this time to visit, and as I spoke to her the words all ran together nicely and made sense, yet none of them seemed to be coming from me.

Dylan was immediately transferred to the newborn intensive care unit at the hospital. Known as NICU, the unit was three floors down from Ward 53, a distance that at the time seemed endless. When he got there, Dylan was placed straight onto an apnoea mattress in an incubator, where the nurses fixed monitors on his body so they could assess his condition.

Seeing him, a nine pound fourteen ounce newborn, with a good size head, super-long legs and broad shoulders, his limbs touching all four sides of the incubator, it seemed impossible to believe that he was anything but perfect.

Time passed quickly and it was growing late. I was feeling weary. Dylan had been lulled to sleep in his new surroundings, as I sat next to his incubator. With this knowledge, I slipped away, climbing the stairs to my bed in Ward 53. Everything was how I had left it hours ago.

I pulled the curtain around my bed, pretending, if only for this moment, that all was well in my world. As I lay preparing to sleep, I couldn’t help but overhear the lady in the bed beside me talking to her husband. It was past visiting hours. Surely they will come along and tell him to leave, I assured myself. I desperately needed sleep, but their talking kept me awake.

As their conversation went on, I heard that their son, who was now a day old – the same age as Dylan – was being taken to Greenlane Hospital for heart surgery. The couple started to pray together. I still wanted my sleep, but felt time stood still for that moment; how sad for them, yet how relieved I was, as I could close my eyes knowing such a difficult and sad time had not fallen on my family. Dylan was alive and well, safe in his incubator, and I let myself believe that.

Over the days that followed, I observed the routines of life in the NICU. Both babies and parents gained a sense of security from these routines that were a lifeline to all concerned. Dylan was to stay in his assigned place, on the right, next to the door, until his condition stabilised. Years later I would revisit the NICU, purely to peer through the small glass window in that door and see the space that had held such a heightened episode in Dylan’s early days. There was an immense comfort in this ritual.

Tests were being carried out to try to ascertain what had caused Dylan’s blue episode (apnoea attack). All of these tests were coming back negative. The nurses were becoming very fond of Dylan and felt it their personal vocation to find out what had caused his distress.

I seemed to be removed from the outside world at this time. Michael was caring for the other children with the help of my family. Often there was no one else but Dylan and me, and the mother-child relationship was growing so strong between us. And yet, there were moments when I seemed to be playing a part in a play: a part where I hadn’t had time to learn the script. The play had been only minutes into Act 1 when I was thrust on stage. There were still the following acts to perform. The play must go on, and I had my role to play; Dylan was in the NICU, awaiting my performance.

I had been told Dylan was to be transferred to the nursery on Ward 54. This was an extension of the NICU for babies that were no longer critical, but still needed expert nursing care.

It appeared Dylan’s life was no longer in danger, and he was on the road to recovery. Yes! If he remained stable, I could again be a mother to him and our other three children – a family again. Dylan’s new home would still be on a different level to where I slept, but my spirits soared with this latest news, just as they had only days before when I first laid eyes on my newborn son.

I was once again interested in the outside world, so when my mother and sister came to visit, I welcomed them energetically. Holding Dylan, my mother thought he felt cold, so she took out a present of clothes she had brought for him. We all joined in, clucking like hens as we dressed Dylan up in hat, booties and cardigan. He looked so handsome and strong in his new blue outfit.

Later that evening, alone in my bed, my mind wouldn’t allow me to sleep, and I began to imagine that someone was attempting to kidnap Dylan. I couldn’t settle. Thinking back over the evening, I recalled that when I’d said goodnight to Dylan there had still been many visitors looking in on the nursery. Hours later, in the uneasy space in my mind, I became convinced he wasn’t safe.

Looking back over the distance of years, and knowing the events that followed, I wonder whether motherly intuition took over that night? Did I somehow sense something was wrong? Whatever the reason, at the time, I experienced an immense urge to see Dylan.

I crept out of my bed and took the lift to Dylan’s nursery. It was late, maybe 11:00pm. I had brought my camera with me. Why? Was this to be my last chance of a photo of him? Reunited with him, I couldn’t bring myself to leave. I circled the room, warmed by just being near to my son. Looking out of the hospital windows into the night, I relaxed, allowing my thoughts to be carried along with the dance that the bright lights were making on the water’s edge of the lake below. How I wished to be home.

Making my way back to Dylan’s bassinette, I glanced down at him only to see he had turned bluish-black!

The time from when I screamed until a nurse arrived seemed too long. I told her so. Did the alarm sound from Dylan’s mattress, alerting staff that he had stopped breathing? If so, I hadn’t heard it in my distress. Was his body being cold earlier a sign that he was struggling to breath? If I hadn’t been mysteriously sent to watch over him, would he now be, could he now be …?

Questions surfaced in my mind, but I couldn’t think about them now, and buried them deep within. Later, the photo I’d taken minutes before served as a constant reminder of those moments, although even without it, the memory would be forever imprinted in my mind.

Three, then four nurses, were now tending to Dylan. He was connected to an oxygen tank. We were to wait for a doctor. The smallest nurse, with a sweet smile and an English accent, urged me to phone for my husband. “He should be here with you,” she said.

She was right, I did need Michael with me. I dialled our home number, looking out again into those bright water-borne lights, still dancing, never dimming. But Michael couldn’t find anyone to watch over the children, who were sleeping. We both knew I would have to get Dylan through this alone.

When I returned from using the phone, the nurses’ expressions were worried. The doctor was taking too long. The nurse that had taken charge put through another call, and seconds later, the doctor entered the nursery.

It seemed Dylan’s life was in danger again. He no longer seemed a part of me, nestled protectively in the arms of a nurse. As we left the ward, I shuffled behind the doctor, nurses and the oxygen tank now giving life to Dylan. We crammed into the small lift. I knew we were destined for Dylan’s first home – the NICU. My heart sank even more, if that was possible.

As I followed the medical team through the familiar NICU doors, one of the nurses attending to Dylan suggested I leave him with them, and to come back in a few minutes. Her look was reassuring and friendly, and gave me great comfort. I did as she suggested and left. But where was I to go, I wondered?

After what seemed like hours, but was in fact minutes, I re-entered through the heavy doors. Dylan was now in a more distressed state than before. He was resisting their attempts to insert needles and connect tubes – more than resisting, fighting with all the power bestowed on him at birth. Dylan’s name means “the sea”, and it seemed to me that all the power in the sea was with him that dark night.

One of the nurses, seeing the anguish on my brow said, “Go rest for the night, he’ll be okay with us.”

Again I left. It was past midnight. This is the time in the world when everything seems still and darkness envelopes. I sheltered in this darkness in the stairwell. I felt like an invisible thread was trailing behind me, binding mother and child together. I sensed Dylan’s struggle. I sat and cried for us both; for us all. How long I sat there, I do not know. Cold air roused me and I climbed the stairs to my small place in the hospital, despair all around me, still trailing that thread.

Angels do exist. I believed so from that night. As I entered Ward 53, two nurses guided me in the opposite direction from my shared room, into a single room. They signalled to the bed. I sat. They let me know, in an unspoken code, that they were aware of what had taken place for me and Dylan, less than an hour ago. They carefully placed all my belongings in the right places in my new room. They closed the door without a sound. My angels had flown.

To this day, I don’t remember their names or faces, just their grace and spirit, which are still with me now. Gifts bestowed on me that night. I clutched Michael’s jumper and snuggled under the covers of my new bed, exhausted. Silent tears collected in the woollen jumper and mingled with my husband’s scent. I found comfort in that reminder of his presence; it gave me a comrade in a fight in which I would need the best troops.

Dylan, are you with me? Stay with me, I’ve only just begun to know you. These words echoed in my head as I allowed myself to fall deeper and deeper into the blanket of darkness. It was just as when Alice fell into her darkness – except that Alice landed in Wonderland.

“Would you like to come down and feed your baby?” A bright light shone into my face. The voice behind it carried the message of hope that Dylan was calling for me, needing to be in my arms. Dylan’s cries propelled me out of bed towards his incubator in the NICU. I found myself a chair in the corner and, breast milk flowing freely, began nursing Dylan. The unit’s neon lights provided the lighting for what I came to think of as Act 2 Scene 1 of the play in which I was acting the supporting role; Dylan, of course, was the star.

It was now 4:00 am. Every part of me felt stimulated by the life force I saw in Dylan’s eyes. He was feeding noisily and nuzzled closer, looking at me with his piercing blue eyes. I cradled him closer, overjoyed by the sustaining warmth that his presence provided me with.

The ever-changing drama of the play took a turn when a young, vibrant doctor entered the room to talk with one of the nurses. Once the formalities had been dealt with, the nurse asked the doctor if she was still enjoying her dance classes. The doctor replied enthusiastically, but claimed she was having difficulty with a new step. With that, she put down the files she had been holding, found a space and let her feet glide, her body gracefully following, as she tenderly embraced the shadow of her imaginary partner.

The feeling of wonder and life in the doctor’s demonstration engaged me and I felt human again. To be treated to a glimpse of the world outside the one in which I had become enclosed left me energised. It was the same kind of energy I had seen so many times watching the famous Tour de France cycling race. When the rider wins a stage, he gains the yellow jersey. The exhaustion the rider feels on completing the race is overtaken by exhilaration when the stage has been won.

That night, looking around the unit at the babies in their incubators, one of them Dylan, I felt my own stage had been won, for I was now looking at my prize. Happiness had been handed back to me. I was taking it back with outstretched arms.

Within days, Dylan was discharged from Waikato Hospital with an apnoea mattress for security, and our family was complete. No conclusion was reached about Dylan’s health, yet I gladly took him home. We celebrated by placing Dylan’s birth notice in The Waikato Times, in the form of a verse written by Michael.

A brother for Jessica, Joshua and Benjamin, Angela and Michael are delighted to proclaim the birth of a beautiful and oh so precious boy. He is so wonderful, wonderful. Dylan Francis is his name. And to all those he touches, he sings to them of joy.

These words were to ring so true. Dylan was a joy. My memory of those early days with four children under the age of six years is not so clear. I do, however, remember well Dylan’s constant delight when surrounded by his brothers and sister. They provided round-the-clock entertainment for their new brother: puppet shows, imaginary train and car rides, and reading sessions. We, as a family, were drawing Dylan into the protective arms of our life. He was becoming closer and closer to us each day. We kept a tight hold on him; we were not going to let him go, whatever the cost.

Winter brings coughs and colds to us all, so when Dylan’s cough persisted for a few days, I attributed his distress to teething. A close friend came to visit, who also had four children. When she was leaving, after sharing several cups of tea, she asked, “Are you sure he’s teething?” The question unnerved me. I continued to rock Dylan in my chair, reassuring myself that teething was often distressing for babies and all he needed was a good night’s sleep. Dylan and I did not sleep that night, however, and he worked harder with his coughing. What’s more, each coughing episode lasted longer than the last.

I remember the next day well. It was 16 July 1993, our darling daughter Jessica’s seventh birthday. We had organised a party, and I was expecting six more young girls to arrive home from school with Jessica that afternoon, full of anticipation for a table laden with pink iced cakes and candles.

As 2:00pm approached, something within me stirred. A sudden rise in adrenalin, the product of an acute awareness of Dylan’s failing health, charged me into action. I gathered a few belongings and covered Dylan’s tired body with a blanket. I walked out the front door and down the path, leaving the balloons and party hats behind. Motherly intuition pointed me in the direction of the doctor’s waiting room. The celebrations would have to go on without us.

After a brief consultation, our doctor referred Dylan to the Accident and Emergency Department of Waikato Hospital. It was the same building, yet a very different place to where Dylan’s small life began. Now, at nine weeks of age, we were back here, waiting. Bare walls, peeling paint and more contemplation: Would Dylan ever be free from hospitals?

Before long, Dylan was admitted to Ward 53 with a diagnosis of respiratory virus. Our room, which looked out onto a brick wall, was dark and not helped by the coldness of the winter day outside. Such despair enveloped me at that moment. I pulled Dylan closer to me. Here we were together again. We had few possessions, yet a richness of spirit. He is strong, I thought. The virus will pass.

The nurses came in relays through the night, giving Dylan nebulisers to help his breathing. I almost discouraged their interruptions as he needed sleep and I did too. Yet I knew the nebuliser gave Dylan respite from his distress. He was now very pale, tired and still coughing, and slept only intermittently in my arms.

Our daughter’s birthday party went ahead, thanks to a few helpers. I hoped she would know that the tears I shed on this, her birthday night, were for her.

Another night passed and Dylan improved slightly. He began to breathe with more ease, enabling him to feed with zest. At the early morning doctors’ rounds, it was confirmed that Dylan had a respiratory virus; a virus that was already filling the majority of the beds in the ward with young children. If Dylan continued to make progress, we could go home that day. And progress he made. By early evening, the registrar on duty stamped “Discharge” on Dylan’s already growing file.

“Maybe Daddy saved a piece of birthday cake for me, and a party hat for you,” I whispered to Dylan, as I pressed the button for the lift to take us down to where Michael and the children waited to take us home.

Dylan progressed from his bassinet into a cot. We were attempting to keep our life in balance, living in a three-bedroom house with four growing children. Our small house begged for more space for its occupants, so we began building an extension, turning our garage into a large rumpus room. Our two-and-a- half-year-old son, Benjamin, was endlessly entertained by the builders wielding their hammers and other tools.

At this time, Dylan was forming a pattern with his sleeping and eating – a joy for his mother to behold. The only reminder of his first turbulent few weeks was his apnoea mattress. I routinely pumped the mattress up with air, coordinating the task with his sleeping patterns. It didn’t disturb me; on the contrary, it comforted me. It had been a part of Dylan since the day of his birth, so I had known nothing else.

Days were predictable yet peaceful, juggling busy life with precious moments, rocking Dylan to sleep and cherishing long adoring gazes at him, while soothing lullabies lulled us both into dream world.

School holidays were soon upon us once more and, with Dylan now fourteen weeks old and well, we were spurred into arranging a well-deserved holiday.

A longing to breathe sea air, tread footprints in the sand and gaze at the ocean put our dreams in motion. But before the convoy left for the coast, I had one more appointment to keep. As I drove to the local Plunket rooms, my mind wandered. Images of succulent, tasty picnic treats for the beach filled my mind, followed by a long list of foods yet to be purchased. As I entered the Plunket nurse’s room, my intention was to get the appointment over quickly: the aisles of the local supermarket were awaiting my arrival.

We hadn’t seen much of the Plunket nurse. Dylan had had so many meetings with doctors at the hospital that Plunket appointments hadn’t been necessary. Yet the nurse diligently logged Dylan’s respiratory virus and a recent ear infection into his Plunket book. She also noted that his weight gain since his last appointment was poor, making it clear that this was a concern. She stressed the need for Dylan to be assessed at the Mothercraft Unit attached to the hospital; if not today, then tomorrow.

My throat constricted and my face flushed hot. I was pinned to the spot where I stood. I felt my role as a mother was being questioned, my nurturing exposed. In my head, I shouted, Just one more try, I know we can do this together. We’ve just hit a bad patch. My reply to the concerned nurse contained more than a hint of pleading. This was a small interlude in Dylan’s recovery I said, hastily explaining our impending family holiday. I promised that if Dylan’s weight had not improved on our return, I would gladly cooperate and be admitted to the Mothercraft Unit.

We agreed on this plan. I took it as a personal challenge. The prospect of contemplating the walls of another hospital department terrified me. Dylan just needed to recover from his latest setback. How I wanted to believe this with every part of me.

The warmer days of September were upon us and, ensconced in our holiday accommodation at Whangamata, we took full advantage of them. I took endless photos of the children swimming in the sea and picnicking by the boats. I wanted to make sure this would be a holiday to remember. I couldn’t know how special those days in the sun would become. Dylan seemed well, although we noticed that his head was, at times, sweaty. We blamed this on the warmer spring weather and removed a layer of his clothing, alleviating the problem – or so we thought.

After a week, I took Dylan to the Whangamata Plunket Rooms to weigh him, and he tipped the scales up ever so slightly, so we carried on our holiday, going further north. While Michael took part in a flute seminar in Auckland, I took in the sights of the big city with the children, who were still buzzing with all the energy school holidays bring. Then the weather turned. It rained and grew cooler. Dylan didn’t adapt well to the change, and a cold turned to a fever overnight. I was concerned. Michael parted company with his flute ensemble and we returned home, earlier than expected.

It was a major setback for Dylan. Looking back, he didn’t fully recover from this illness. Dylan’s weight continued to creep up the scales, and weekly weigh-ins became the norm. Little did we know these gains were mere splinters of time we were buying. 

Enter Peter Heron into our lives. A routine appointment had been arranged with a paediatrician; a follow-up for the apnoea attacks Dylan had experienced at birth. We were to discuss the continuation of the apnoea mattress at the appointment. I was feeling very confident with Dylan at home, but hadn’t wanted to stop using the mattress before meeting with the doctor. I decided I would see how I felt at the appointment.

Sitting, waiting with other mothers in the children’s clinic waiting room, I felt totally at ease. I knew this hospital block and all its different levels intimately. One of the mothers, who had twin boys in a pushchair, started talking to me. We had met earlier, when our children were in the NICU. We exchanged phone numbers and suggested a morning tea get-together. It was a pleasant prospect, but a luxury that, as it turned out, remained unattainable for many, many months as Dylan’s life progressed.

It was late afternoon when Dr Heron called Dylan’s name, and we stepped into his room. We discussed Dylan’s medical history and the use of the apnoea mattress, which I decided to carry on with for a while longer. As we were his last appointment for the day, Dr Heron went to the trouble of fetching a scanner from the neighbouring delivery suite. On his return, he used the machine to take images of Dylan’s head. The information the scanner provided proved insufficient, and Dr Heron decided he needed more data. He referred Dylan for an x-ray as an outpatient. He would forward the necessary paperwork, he said, and we would hear back in a few weeks. Yet again, Dylan had another hospital appointment to attend.

It was early evening by the time we left the appointment, and the waiting room was nearly empty. I carried Dylan carefully under my wing – I wanted to protect him so much. Or did I want to protect myself? Many questions filled my head. What had made Dr Heron seek out the scanner machine? Why was Dylan’s weight still fluctuating? (At this appointment he had once again lost weight.) And why was there a need for further investigations on Dylan’s head?

My strength felt severely sapped. Dylan’s cough from his recent flu attack was tiring him, and his pale face looked almost transparent. He never complained, and seemed almost to be apologising with his knowing stare; Dylan’s eyes were so luminous. I persevered with breastfeeding, even though with his cough there were times he would spill the majority of his feed over me.

That night, with my heart sinking, I nuzzled close to Dylan, and while he dozed in my arms I whispered, “I will keep this up as long as you do.” Strong words, but I had the easy part. On this night I had him breathing, sleeping in my arms. He was my treasure.