M a x w e l l   P e t e r

Born Wednesday
16th August 2000
  
Died Saturday
16th September 2000

Max was conceived on Brindabella in the Huon River while we waited for a storm to clear across Bass Strait. We were part of the crew taking Brindabella back to Sydney after the Sydney to Hobart. The rest of the crew had gone ashore in the intrepid "Fish Hunter", an inflatable dingy of dubious buoyancy, and we had volunteered, perhaps a little too enthusiastically, for anchor watch. We played some Adrea Bocelli, and, well we could have drifted to Antarctica, and not have noticed.

We lived in Manly before Max was born, near Little Manly Beach. It was a little older style apartment, with polished wooden floors, on the ground floor of a block of 5. The sunroom at
the front of the flat served as an office. I was working as a freelance graphic designer from home. We had a perfect life. The day I saw the extra red line on the pregnancy test I was beside myself. I remember staring out at the flat dusk ocean, with its pink and golden light, just imagining swimming in the glassy water with my future child. Michael glowed with happiness. We though we were the luckiest people alive.

After Max was born 6 1/2 weeks early he needed ventilation and was given a substance called surfactant as his lungs hadn't quite finished developing. He was transferred from Manly Hospital to North Shore via the NETS team (neonatal emergency transport) and plugged into a humidicrib. That night, I lay awake feeling hollow. I'd grown accustomed to Max's nocturnal movements, and his painful departure was something that neither my son nor I had wanted or expected.

Max was beautiful. He had dark grey pools for eyes, much wiser than his age, a gorgeous funny nose, a tiny cupid's bow mouth, little receding chin, small rounded ears, long arms and legs, an "outy" belly button, and the biggest flattest feet you have ever seen. I gazed at him sucking his bottom lip and yearned to hold him.

The next morning I raced over to the Neonatal Intensive Care Unit at North Shore Hospital. I scoured the babies until I found Max. Ahhh, my shoulders dropped. There he was. Oblivious to all the beeping alarms and monitors and tube. Next to him were two twins weighing 500g each. Max was fine, I consoled myself, he's a hefty 2.4 kg He'll be fine.

Everyone kept reassuring me. It's going to be hard, I was told. I could deal with "hard", but I didn't want to deal with "impossible". For the next few days I sat on the uncomfortable stools (don't ask for stool softener, it doesn't relate to the seating arrangements) staring at Max, willing him to get better. We even attempted breast feeding. Max loved the idea of feeding. The minute I held him to my chest, he'd listen intently, then fall sound asleep for hours. I would watch each heart beat and breath on the monitor above my head and see it become so regular and calm.

Despite this, he didn't seem to be getting any better. He was jaundiced. His bilirubin levels were higher, and climbing, so he was put under UV lights for 2 days. I joked about his holiday in the Bahamas, and was a lovely tan he had. It was so easy to become used to all the machines. I accepted them as part and parcel of mother hood.

The neonatologist detected a heart murmur and noted some abdominal swelling. X-rays were done and the cardiologist was called to see him. The x-rays revealed Necrotising Entercolitis, which basically means death of the bowel. On the strength of this, and the distant possibility of surgery, we received a 6 am phone call informing us of the probable transfer to the New Children's Hospital at Westmead. Mike and I raced up to the hospital, arguing about the car keys, and arrive to find Max reventilated. After getting so excited about the fact that he was stable it hurt so much to see him back in the critical care section with tubes in his nose and throat, and a canula sticking out of his foot and wrist.

The cardiologist finally arrived and after viewing Max's heart on an ultrasound monitor, "huddled" with the neonatologist. My heart sank. My back went hot, and my hand prickled with fear as we followed him into the "interview room". I later renamed this room with its gentle eighties décor and table lamps, the "bad news room". The cardiologist diagnosed tetralogy of fallot, a serious but generally operable heart defect. I heard his voice as if he was speaking in a tunnel, very far away. It was my worst nightmare. I clung onto Mike's hand and felt like I'd failed. It was decided that Max needed the facilities at Westmead Children's Hospital.

The trip to Westmead was horrible, he was so tiny, only two and a half kilograms. It broke my heart to see my tiny son in the day light. He was so pale and yellow and hooked up to so much equipment. As we wheeled him our of Maternity there was a family group assembled on the lawn. Their baby daughter was being "turned off" that afternoon. The mother of the baby looked at me and smiled a sad smile. I glanced back at Max and wanted to rip all the tubes and wires off and run away with my son. I was all so much beyond my control.

On arrival at Westmead Mike and I followed the surgeon and the neonatologist into another "interview room". We were told his condition looked severe enough to require surgery, but the doctors felt positive about the outcome. Holding hands we followed the procession of screaming machines and doctors surrounding our son to the theatre, kissed him good luck and waited.

My mobile rang after only an hour, my heart raced and I felt sick. It was too quick. My instincts told me this was a bad sign. The surgeon's face told me all I needed to know. Once the surgical team opened Max up, they had discovered so much dead bowel seventy five percent of it had to be removed. This left him with just 36 cm A baby needs at least 50 cm to absorb water and nutrition. My heart sank. They told us he had a 50/50 chance of long term survival. His chance of breast feeding were nil.

Michael and I were given the choice as to whether to continue treatment. If we chose not to he would die within 2 days or so, and if we did...  they didn't know. Mike and I met with our entire extended family to discuss the options. If he survived he would have to spend between 1 - 3 years in hospital on IV nutrition which can cause liver disease. I was also told that he would be given some of my milk through a tube to try and encourage his intestinal growth, which was his only chance of long term quality of life.

For us there was no choice. Fifty fifty was the toss of a coin each day. We elected to give him the chance to fight it out. We also had to consider his cardiac surgery in about six months. My instincts told me that he would not make it. Mike is the eternal optimist, never suspecting the situation could end any other way than ideal. That is his strength.

Over the next few weeks we talked to him and cuddled him (all the wires and tubes made holding Max difficult, it was like looking at the back of a stereo). It was incredible how easily we adapted to each obstacle. We cared for him (washed him, cleaned his eyes,mouth and nappy. I negotiated the wound that extended from one end of his tummy to the other, and learned how to change a miniature stoma bag. I fed him limited amounts of my expressed milk through a nasogastric tube. I think I expressed a record amount of milk over this period.

Mike was working for SOCOG in the props department for the opening and closing ceremony of the Olympics, so was very busy during the day, spent his nights with me at the hospital.

So that we could be nearer to Max we leased a flat in the area about 500 metres away from the hospital and gave notice on our Manly flat. I walked back and forth to the hospital more times than I can remember. I was on automatic pilot. I was averaging about 3 hours sleep a night, and basically my day consisted of waking at 7, dressing, expressing milk, walking the to the hospital, my mum in tow, charging up the long hallways, up 2 flights of stairs, down another long corridor, putting my milk from the previous night and morning in the freezer, and racing to care for Max.

I would interrogate the doctors on the rounds, hanging onto every sceric of information, straining to understand the terminology, looking at the monitors and hoping. I would then "do his cares", cuddle him go home, and repeat this process about four times a day. I had given birth a week before. I did this for four solid weeks and treasured every second.

Max got yellower and yellower, and the neonatal team started to do tests for liver functions and diseases. I knew I was going to lose him now. My fears were confirmed when he was diagnosed with Allagilles Syndrome, a rare but serious genetic condition. We were asked again to decide to continue treatment. To continue meant a less than 1% chance of long term survival, and a great deal of pain and suffering. His liver was sick, and on a normal healthy baby a transplant would be needed. Max was not healthy and not a candidate.

His heart needed surgery and his gut was too short. During this whole time however, Max learnt to smile, was sucking and loved cuddles. He would look up at us with such joy it melted us. We had only one option. We told the doctors to discontinue treatment. They packed him off to surgery, took the tube into his chest for feeding out, and inserted a new nasogastric tube. We were given morphine, a bag of syringes and nappies. It was up to Max now.

Our family watched helplessly as we bundled him up, carefully placed him in the safety capsule we had installed in our tiny car, and took him back to Mike's parents house. Max was in the back seat, with us in the front. I looked around at him and saw that he wasn't breathing (or that I could see). Realising that he might have died or already be dead, I jumped out of the car and into the back seat. We stopped at a red light and, and held Max on the head and whispered "Not now, don't go yet" over and over again. In the background I could hear a car beeping. The car behind was yelling to "move it". Max was fighting to stay with me.

Both our families were at Greenwich to meet us. It was bright, very noisy and cold in the back room. Max started struggling for breath again, gasping for air, his body convulsing. I grabbed him and told him I loved him. Mike and I took him into the living room, which was warm and dark and quiet. He relaxed and began breathing softly through his nose.

Whenever I held him his breathing settled down. At other times is was gurgly and raspy. A number of times he went through 30 seconds of no breath when we thought we'd lost him and we'd tell him over and over again we loved him. He'd suddenly startle us with an almighty gulp of air and a yelp. We cried and told him it was OK to stop fighting and he was safe at home.

The family in the rest of the house consoled themselves with a lot of wine, and got very noisy. As we had moved Max into the quiet sanctuary of the front room living room, we could just hear a muffled dim. After everyone had either gone home or to bed, the house was very still. I was very tired and my arms were aching from holding Max for hours, so we put the bassinet on the coffee table and tucked Max in it, making him a little nest the way that the nurses had shown us. Max fell asleep. Michael suggested that I get some rest, so I dozed on the sofa.

At about 12.30 am Max opened his eyes briefly and kept his grip on Mike's finger, saying with his lack of breath and his eyes that he was leaving us. Mike woke me up saying "Di, I think it's time" and I pressed him to my chest crying "no". We kept waiting that next gasp for life, but it didn't come. We called the doctor to confirm his death. She came and pressed the stethoscope to him chest, listened quietly for a minute. She sighed, lifted her head, looked us both square in the eyes and said "yes, he's gone".

The next day, our friends and family filtered through the house to say "good-bye", and some seeing him for the first time. He looked like a china doll, wrapped up in the antique white cane bassinet. At about 6.30 PM, the funeral director sent a car to pick him up, and we said our last good-bye before zipping up the specially made bassinet, and watched the station wagon disappear around the corner, with our special angel in the back.

He looked so small in the extra long black car. We discussed his service with a lovely woman, Leigh, who arranged everything for us. We chose a tiny white coffin, a waterside service, the music, "These Days" by Powderfinger, "Protection" by Massive Attack and "Time to Say Goodbye" by Andrea Bocelli. Mike and I went over to the funeral director's chapel to decorate the coffin with silver boats, hearts and flowers. This was a labour of love. It looked beautiful. When I first saw the tiny coffin I was inconsolable. It was so tiny. It took every ounce of my strength to touch it, let alone "own it" by painting it.

About 150 people came to Max's good-bye service. There was table under a tree on a grassy flat next to the water, and our family and friends spread around us, spilling up onto the terraces of the garden. We both spoke and so did my mother and step mother. These things are not what I had planned. I did everything by the book during my pregnancy. I ate well, didn't smoke, had one glass of wine at our wedding on Shark Island in March, swam everyday, did yoga, read all the right books. These things were completely beyond my control.

However, Max was a blessing, short as his life was, and through help from a special doctor at the hospital, we are getting through it. I have developed the philosophy not to take things for granted, to greet everyday as a blessing and that it is only through the loss of something that we can truly appreciate its value.

I will miss his expressions: frowns, smiles, his prodigious finger sucking, and his stubborn refusal to have his nappy changed, but mainly his fighting spirit. But he exists in the minds and hearts of everyone who met him or heard about him, and that is his legacy.