My journey to motherhood looked textbook: picturesque. I was seven weeks’ pregnant when I married my husband Daniel. By instinct alone, I knew I was having a boy and he was our precious secret, held between us as we waltzed the night away on the 31st March, 2012.
On Wednesday the 7th November 2012, at 39 weeks and 4 days, I gave birth to my son, Wolfe (pronounced Wolfie) by spontaneous natural labour. He was perfect: my tiny, squirmy baby. Soon after birth, Wolfe suffered a massive myocardial infarct and required resuscitation; my newborn baby had a heart attack.
And nobody knows why.
He was transferred to the Royal Children’s Hospital and crashed onto ECMO, a heart/lung bypass machine, at barely 36 hours outside of my body. Six days later, on Dan’s 31st birthday, he successfully came off ECMO, the sedation drugs were weaned and we were able to finally meet our son. But within a few days, Wolfe began to fill up with fluid again and was requiring more and more inotropic drug support to help regulate his heartbeat. It was decided that without intervention he would certainly die from cardiac arrest; it was a matter of hours before we would lose our son.
While doctors knew that because of Wolfe’s particular condition, ECMO was not going to allow for recovery, they decided to electively put him back on it and do an angiogram (heart x-ray), to see if there was something else going on.
We had been living in hospital accommodation and Ronald McDonald House since the day Wolfe was born. Our home, our dogs, and all of our day-to-day obligations were seen to by friends and loved ones and kind strangers, thanks to the generosity and compassion of Support for Mums, a Melbourne-based charity supporting mums and their families in times of crisis.
Our freezer at ‘Ronnie Mac’ was filled with meals and snacks that were delivered from all over Melbourne and surrounds. My sister was the marshal for donations and she would funnel supplies to us as we needed them. It was an operation of generosity and empathy that buoyed our hearts and kept us going.
The angiogram revealed that Wolfe had coronary vasculitis: an inflammation of the coronary artery and surrounding blood vessels that made them virtually swollen shut. We were at one of the best paediatric cardiac units in the world, and none of the specialists, hailing from all over the globe, had ever seen this condition in a newborn. Treatment is relatively straightforward – a cocktail of steroids – and recovery from the vasculitis was quick.
Wolfe stayed on ECMO for 8 days, coming off the machine for the second time on the 29th November, 2012 – my 30th birthday.
The left ventricle of his heart was still dysfunctional, but echoes showed thickening of the wall, which meant healing. We were told we would be home by Easter of the following year, but that it would be a long, slow process to see Wolfe gain weight, and have his medical tubes removed.
It was at this point that we made the decision to move out of our home in Preston and into Ronald McDonald House permanently, to fight alongside our son in PICU, settling in for what we believed to be the long road to recovery.
Support for Mums arranged the entire thing: volunteers to assist with packing; boxes, packing materials and supplies; food for the volunteers… everything! We did not have to shift our focus from our son for one second and I cannot capture what this means to me.; I never had to miss a moment with my son throughout his ferocious fight for life.
So, then we waited. We threw ourselves into being Mum and Dad. We would be at his bedside from 7:30 in the morning until 11:30 at night. I would express every four hours, including overnight, and I would ring his bedside nurse at 4am as my ‘reward’ for doing so. I could hardly breathe every time I picked up the phone, because I never knew what I was going to hear. We changed his nappy and sang to him, we read nursery rhymes and helped him discover the world as much as we could. Wolfe gained weight. He made his milestones. He got to know his mum and dad and we got to know our darling baby boy. He had his first Christmas and we played Santa for the first time, something I have looked forward to doing from the moment I found out who Santa really was!
But then he crashed.
He needed resuscitating after a simple procedure to insert a broviac line, a central line under the skin for long-term drug administering. His heart rate slowed and he arrested. Doctors were able to stabilise him, but this became the knife edge we lived on.
He was powerful beyond logic in some ways, he fought off massive infection when an IV became infected and his heart rate hit 200+bpm, and his temp was 42 degrees. But then the simple task of turning his little body every four hours became deadly, as turning his head and moving the tube in his throat could stimulate the vasovagal nerve and drop his heart rate, from which his damaged heart couldn’t recover on its own. It was like walking a tightrope 24 hours a day.
We were eventually told that the doctors didn’t believe that Wolfe’s heart was going to get better. Without a transplant, there was nothing more they could do for Wolfe, beyond the inotrope drugs he was having, and keeping him safe and healthy while he grew, gained weight and hopefully grew healthy heart tissue to replace the damaged tissue.
Australia’s transplant guidlelines state that a child must be 12 months and 10 kilograms to receive donor organs.
Wolfe was three months and a little over 3.5kilograms.
We were devastated, but refused to sit back and wait and see. We wanted to know, if money was no object, what were our options for our son? America, parts of Asia and Europe perform heart transplants on newborn babies regularly. It was possible. Organ donation is also, understandably, a highly emotive and political issue. But the guidelines were just that –guidelines. So we pushed, and we questioned, and we sought second opinions, and demanded meetings. I confronted, and challenged, and appealed, and pleaded.
And, we began to fundraise. If they couldn’t do it here, we would take him somewhere where they could.
Wolfe had been intubated through the nose from birth, which is highly uncomfortable and unusual. They usually do a tracheostomy after seven days, but because no one knew what Wolfe was going to do, and because we all believed he would be coming off intubation, three months went by and the wretched tube was still in his nose. Knowing that he would require long-term support, a tracheostomy was performed and we got to see his perfect face without tape or tube for the very first time. The surgery went well and we were optimistic. But, after the surgery, Wolfe was pale and vomiting his feeds: something he usually never did.
Tests were done and they found he had contracted influenza A. It sounded harmless, but the flu virus can be deadly to anyone with a heart condition.
Three days later, the day before valentines day 2013, it overwhelmed his system.
Wolfe died in my arms and there was nothing I could do to stop it. I had chased, and fought, and screamed, and talked, and run, and learnt all that I could. But I couldn’t stop him from dying. He died. My son died.
I don’t know how I did anything that I did in the days and weeks that followed. All I know is that my actions needed to reflect my love, my pride and my respect for my child, and that is all that sustained me. It sustains me still.
I told Dan the week before Wolfe died that if the worst ever happened, I needed to go away: that I needed to be taken home to my parents’ farm and that I didn’t when I could come back. But I promised I would come back. Dan told me he only wanted to be where I was, so together we retreated to my parents near Byron bay. We rested there for three months before returning to Melbourne to resume work. We lived with Dan’s cousin in the city. We house-sat for my sister and eventually we got our own place where we are today.
I found out I was pregnant a few weeks after coming back to Melbourne, and it is the only reason we are still alive.
Wolfe changed my life. I feel like my life finally began the day he was born – as though I had been training for that fight for 29 years. I had been chased by some kind of subterranean turmoil since my earliest memory, and now it all makes sense. I knew he was coming. Living without him feels unnatural. Your baby dying before you goes against nature, but it has happened to me. And every day I must choose to either stay where I wake up: in broken despair and rejection of this unnatural, miserable life I now have to lead; or to move away from despair to find gratitude that I met him, that he chose me, that I am the only one in the world who gets to be his mother.
Without Support for Mums, I would not have had the freedom mentally, emotionally, physically and financially to absorb my son and share his life as much as we were able to. The kindness of strangers and the motivation to pay it forward is still sustaining me. The act of giving back is all I have left to channel the passion, pride, respect and fiery love that I have for my son.
I will be jumping out of a plane on 29th November, my 32nd birthday, to raise money for Support for Mums.
If you would like to help me give back to Support for Mums, please click on the link and donate now. Every amount makes a valuable, immeasurable difference.
About Support for Mums:
Support for Mums has been established to support women and their families when living through circumstantial crisis.
Having a baby and raising a family are supposed to be enjoyable times in your life, however the unexpected can and does happen. Sometimes that unexpected can throw your life, and that of your family into a terrible turmoil, causing extreme stress and preventing family life to function at a normal capacity. Day to day activities can add to the distress, or become almost insurmountable.
Crisis may occur through incidents such as depression or anxiety in the family, a premmie baby, perinatal depression (pre/post natal), sick baby or child, relationship breakdown, death of a partner or sudden, unexpected change of circumstances and cause undue stress on the family.
Support for Mums and their Families Inc provide short term practical support and funding where needed to ensure that practical tasks are carried out, to assist in maintaining ‘normal’ life and relieve pressure on families during these stressful times. Support for Mums also provides information and referral to quality, necessary support services to families in times of circumstantial crisis.