It had been a super long night, a long weekend even.

It was 5am, the alarms were blaring.

Red lights flashing.

I sat up immediately, the nurse was shaking him, my little boy.

“Matty! Matty! COME BACK!”

My husband was there, sleeping on a mattress on the floor beside me. Against policy normally but these circumstances changed lots of policies for us.

The previous day, one of the wonderful team at Very Special Kids, said “Let’s just ask if you can both stay.”

My sister took Shane (7) and Mackenzie (3) home to bed. We had planned that one of us would meet her in the morning. Make sure Shane got off to school and bring Mackenzie back to the hospital, so Jess could head off to uni.

We had increased his morphine (or hydromorph) and more new drugs, on top of those that were already running through a constant infusion. In the afternoon he had curled up into a ball, a sure sign that he wasn’t comfortable. He even shook or shivered and seemed momentarily unresponsive.

The ANUM or nurse in charge said he looked like he was having seizures – something he’d never done before. Being a Sunday afternoon they got his on call Palliative Care Doctor on the phone.

“Abi,” she said, “From what they are telling me, this sounds different.” I didn’t know, so many thoughts whizzing through my head. “The next 6-12 hours are going to really show us what is happening” She continued.

That night every hour or we gave another medication, hoping some combination would do the trick. He wasn’t screaming in pain, but it was definitely there. Some would work, others not at all.

Between 3 & 4am he wasn’t happy but we gave something else, and he slept I think, for an hour. Luke and I HAD to close our eyes for a bit, we were so drained.

As the nurse shook Matthew, the room filled; The nurse in charge, the hospital nursing lead – who happened to be on the ward. She pressed the big red button on the wall.
Doctors appeared as she spoke to someone on the phone – probably the Medical Emergency Team. More nurses appeared as the nurse in charge stepped in – she had even cared for Matthew personally, the previous two night shifts.
“Let’s turn this off” Switching off the machine that had alerted us to his oxygen saturation,& heart rate. A machine he had been connected to for almost 50% of his life.

“He’s not for MET calls.”

The other alarms stopped. The various teams took pause.

I had known the minute my eyes opened and I went to Matthew. This Is It.

He’s shutting down. He’s leaving us. How long it will take I didn’t know. But before this I hadn’t been convinced.

Some nurses slowly backed out of the room. While two doctors stood at the end of the bed, realising there was nothing to be done.

Nothing SHOULD be done, to interfere with what comes next. We had the technology, we could have done it.

But it would have been subjecting Matthew to further torture.

The nurse in charge said to us “Mum and Dad, why don’t you get into bed with him.”

I was already holding him, standing by his beside. She disconnected his fluid line – plasmalite, the only form of nutrition he had, for 3 weeks now.

The doctors said to us “Let us know if you need anything, we will be just outside.”

We spent most of that whole day holding him. We took turns with my sister Jess, who we called at 6.30am.

“Can you bring the kids in. You might want to be here. Don’t wake them, just come in when they are up.”

My mum arrived she brought snacks and lunch.

Luke’s mum had a flight booked to arrive at 6ish from New Zealand. She had been on a two week cruise with his Dad. Uncontactable for hours after we were told, “A couple of short weeks, maybe.”

Even one of Matthew’s home carers visited. Another sister brought dinner.

I just lay there holding him, often holding my breath, waiting to see if he was going to take another breath, or if he was finished.

When his doctors (his paed and his pal care doctor) visited they both stood in the doorway for a moment, waiting to see him take a breath.
The pal care doctor even asked, “Is he still breathing?”

His breathing pattern was awful, sometimes taking a shuddering breath only 3 times a minute. His colour was awful.

Until around lunchtime, he was still shifting in his bed, held onto our fingers. Enjoyed snuggles, & a tickle under the chin.

In the afternoon he stopped moving except breathing, not really responsive to us.

Luke’s mum arrived from the airport, driven by his cousin Laura – the person we had chosen to support us for Matthew’s birth. She had witnessed his first two medical emergencies. Seconds after birth and a few hours later when she had come back to visit with her children.

Luke’s mum sat beside his bed, talking to Matthew and holding his hand. Luke was in bed with him.

I was laying on my bed, a little wrung out.

The nurse wandered in to check on him. She stood for a minute chatting quietly.

Luke’s mum said to Luke, “is he still breathing?”

He looked to the nurse. She watched. “Abi do you want to come here?”

I knew at once. I jumped up. Our familiy immediately gathered the kids together and hurried out of the room, as I held my hand on his chest.

NOTHING.

No more shuddering breaths. No Reassuring warmth pumping through his chest.

Matthew’s brain stem had failed. He had fought for basic life functions for hours if not days.

This was caused by a very rare chromosomal abnormality called, HDAC2. He was the only one in the world with his variation.

There was nothing they could do to stop it.

Today what matters?

Making sure that we share Matthew’s legacy with the world.

The love we have for him means supporting other families who find themselves faced with similar circumstances, helping them plug into support networks. Especially if they also have a rare or undiagnosed condition.

If you don’t fit into a box like ‘cancer’ or ‘heart condition’ there is very little support or funding for your child or family to deal with the unexpected emotionally, mentally, physically, or financially.

We were blessed to find SWAN – Syndromes Without a Name, Australia.

They support everyone with a rare or undiagnosed condition.

Matthew’s legacy has already connected many families with SWAN. Provided over two thousand meals to families in disaster zones or third world countries.

We hope to make a lasting impact that shows the love of a little boy can and does draw people all over the world together and it makes the world a better place.