Good Friday Appeal 2017: Andrew Rule’s moving letter to his ‘miracle baby’ grandson

HERALD Sun associate editor Andrew Rule knows all too well the amazing work of the staff at the Royal Children’s Hospital. Ahead of the Good Friday Appeal, he pens a letter for his grandson Gus.

Gus Rule with his father, John and grandfather, Andrew. Picture: Tony Gough

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HERALD Sun associate editor Andrew Rule knows all too well the amazing work of the staff at the Royal Children’s Hospital. Ahead of the Good Friday Appeal, he pens a moving letter to his grandson, Gus.

Dear Gus,

This is the story someone will tell on your 21st birthday. You’ll be there, starring. But in case I don’t make it to the end of 2036, here’s a letter from the past.

A week before you were born I got a call I never forgot.

It was Friday. December 4, 2015. The first week of summer. You weren’t due until late February, but your mum and dad had just found out there was plenty wrong.

“It’s not good, it’s not good,” your dad told his mother, who called me, her voice shaking.

Your parents had your name picked out and your room decked out for your expected arrival in February. Now, three weeks before Christmas, all those hopes and plans had shrunk to a ghostly blob on a sonar screen: a tiny foetus trapped by fluid, threatening your life before it had begun.

Baby Gus Rule, 11 weeks, suffered heart failure in the womb. Gus is held by his father John as monitor wire sand sensors are attached to his little body. Picture: David Caird.

The medical names don’t matter now the way they did then but we heard plenty of them during that terrifying week and the ones that followed. No one wanted to say so, but it was touch and go.

Your tiny heart was out of control. They tried to slow it down in the womb. They slid a needle into your mum then into a vein in your liver to inject a drug for your heart. Imagine that.

You survived. It was like tossing a coin and calling heads and winning. Then having to toss again, double or nothing.

Trying to treat that tiny heart while you were inside was between difficult and impossible. And every hour your heart played up, it threw your kidneys and liver out of action. Something had to give.

Caesareans are risky for premature babies with a rare heart problem, not to mention compromised kidneys and liver, undeveloped lungs and a gut blockage. But the alternative was even bleaker. Two days after the needle in the liver, they gambled and brought you out 10 weeks early. Again, you survived. Another little miracle, a word we dared not use.

You were as long as your dad’s hand — and weighed not much more. Not as tiny as some “prems” but with a medical dictionary of troubles.

You were the youngest-ever patient diagnosed with Wolff-Parkinson-White syndrome — the technical term for saying your heart’s electric wiring was short-circuiting like crazy. The heart failure upset your kidneys, which causes a potentially fatal fluid the medicos call hydrous fetalis.

Two nights later, a Sunday, your blood pressure plunged. Staff rushed to work on you.

“I’m so sorry,” a kind nurse whispered. But you survived. Again. Another bullet dodged.

Andrew Rule has written a piece about how the RCH has looked after his grandson, Gus. Picture: Tony Gough

It seemed to be a signal, as if the medical gods decided you’d shown enough to get a fighting chance.

At midnight they brought an ambulance to take you the short ride to the Royal Children’s. We watched as they transferred you that night, your pale parents bent over you in a fog of love and anguish.

We’ll never forget the emergency retrieval nurse who handled the transfer so well. Her name is Catherine Fox, and when she won the Dame Elisabeth Murdoch nursing scholarship soon afterwards, it felt right and good. Catherine and her workmates do more than 1000 of these life-and-death retrievals each year, helping beat the odds that once took so many lives.

Here’s the thing. Get to the Royal Children’s Hospital intensive care unit in time and the odds tilt your way. That’s what happened for you, Gus. In a few scary minutes you were in the lift up to the Butterfly Ward.

A home away from home the Butterfly Ward isn’t. It’s much better. The new children’s hospital is a triumph and the Butterfly Ward a place of hope as well as heartache. This is where the smallest, sickest babies are cocooned in a tangle of electrodes, leads, lines and tubes and gauges. For weeks, if they’re lucky, then they emerge into the world. Like butterflies.

It’s a calm, ultra-clean place filled with marvellous machines that cost about as much as a small private jet. You were hooked up to one of them, Gus, with so much hardware linking you to the lifesaving machines you could hardly be cuddled by the two people who wanted to do that more than anything in the world.

As the gruelling days turned into one week, then two, we felt as if we were holding our breaths, praying you would keep taking yours.

John Rule with his son Gus and wife Jacki. Picture: Tony Gough

John, Gus and Andrew Rule. Picture: Tony Gough

It was the quietest Christmas Day we’ve ever had. We could think only of you and your parents, wanting to fix everything up and not knowing how. They came from the hospital for a Christmas dinner before going back to their vigil.

You needed surgery to patch a rogue foetal artery that hadn’t closed. That gave you a scar on your back to go with the other operations — two bowel repairs and laser eye surgery. Each one meant another general anaesthetic and more silent prayers that your little heart would stand it.

But it did. Your “ticker” was the size of a walnut but you showed plenty of it. Every time you had a setback, you came back. A fighter, everyone said.

Way back last century, there was a middleweight champ called Rocky Graziano. They made a film about him, Somebody Up There Likes Me.

Well, somebody up there must have liked you, Gussie.

After six weeks your parents could risk talking a little about taking you home. That wouldn’t happen for seven more weeks but each day it grew more likely. The day the doctors finally unhooked some of the equipment so your mother could hold you, you started breastfeeding as if you’d been busting to do it the whole time. A natural. That’s when we were sure you’d pull through, all 1.5kg of you.

Of course, there was a little help.

Andrew, John, Gus and Jacki Rule. Picture: Tony Gough

They say there are no atheists in foxholes. Try the waiting room at a children’s hospital. Cousin Pam is no Bible basher, but when she went on an overseas trip after you arrived she called in to dozens of churches and lit a candle for you in every one. Distant family members who hardly see each other all joined in, sweating daily on the latest on “Baby Gus”.

Then the good folks at Holy Trinity church at Stratford, where a fair few of our lot have been married, baptised and farewelled, put you on high rotation on the prayer list.

Who knows what works? But something did. And it wouldn’t have happened without all those specialists and nurses, stitching their knowledge together to save you.

There was a friend of a friend, a paediatric expert who broke into a frantic schedule to look at you when things seemed very bad. His gesture meant more than words can say.

We thought you were a miracle baby the night you were born, Gus. You were, for us. And still are. It’s the same for every family we saw quietly praying for miracles at the hospital all Victorians should support.

There’s a saying that if you save one life you save the world. The Royal Children’s saves hundreds, around the clock, 365 days a year. Every one of them as precious to their loved ones as you are to yours.

Many happy returns,

Your grandfather.