Kerry Parnell: Children’s hospital cardiac services war putting babies at risk

Kerry Parnell’s son Teddy was one of the first patients caught up in the tensions between the cardiac services of Sydney’s two children’s hospitals. But it wasn’t until he passed away she realised what had actually happened — and she’s appalled it’s still occurring 10 years later.

Becoming a parent for the first time is bewildering enough, having to navigate hospital politics as well, is impossible.

That’s the position we unwittingly found ourselves in as some of the first patients caught up in the tensions between the Sydney Children’s Hospital and Westmead cardiac services a decade ago.

But it wasn’t until after our son passed away, we realised what had actually happened.

Our story began this week nine years ago, when our son Teddy was born in Randwick’s Prince of Wales Private Hospital.

Our euphoria at becoming parents was replaced, 24 hours later, by sorrow, as he was diagnosed with Neonatal Marfan Syndrome, a rare and aggressive form of the connective tissue disorder.

I can remember following our paediatrician as I wheeled the crib through the labyrinthine corridors of neighbouring Sydney Children’s Hospital, still in my pyjamas.

We met one doctor who gently explained Teddy’s heart condition, the most serious of myriad problems. We tried to take in his words as he talked to us about mitral valves and the aorta. Westmead was mentioned, but we probably didn’t need to go “as they couldn’t do anything more” there.

We had no reason to doubt this — why would we, we’d only been parents for a few days, we’d never even been into one children’s hospital, let alone understand the inner workings of two.

But Westmead had a specialist heart unit, Sydney Children’s Hospital did not.

The two hospitals had recently merged and unbeknown to us, while they were meant to work together, relationships between the two institutions were becoming increasingly strained.

When he was a few months old, Teddy started heart medication and we had to go into hospital weekly.

There was no dedicated heart ward at SCH and he, and other heart babies, were billeted on a general ward, next to patients in for things like dog bites and burst appendixes.

On one visit, the family of a teenager in the next bed coughed repeatedly and a few days later, Teddy and I caught the flu. I got better, he ended up in ICU.

He needed heart surgery, but they couldn’t do the procedure in Randwick. We still “didn’t want to go to Westmead”, we should try the Royal Children’s Hospital in Melbourne, who had outstanding paediatric surgeons.

By late 2012, Teddy’s health was rapidly declining and we were bouncing in and out of hospital.

Meanwhile, Melbourne agreed to operate.

“How will we get there?” I asked the SCH social worker allocated to help us. She had no idea, she said, it was too far to fly, we would have to make our own way.

We set off by car, but only got half way. Teddy became so ill, we ended up in Albury Hospital, where their paediatrician was so shocked at the sight of us, he promised to make it his mission to fly us to Melbourne.

When we finally made it to the world-class facilities in Royal Children’s Hospital, our cardiologist was confused — they had a great relationship with Westmead, he said, patients travelled from there all the time. Why hadn’t we been there?

So stark was the contrast in treatment, we decided we would move to Victoria after surgery.

But in the end, we didn’t have to: despite fighting so hard to get Teddy the best care we could, Melbourne would be the end of his journey and in January 2013, he died, aged nine months.

Politics has no place in hospitals, even less so in paediatric ones.

Until our experience, I naively thought medical professionals would have a collegiate approach, with patients’ care their top consideration.

I was too exhausted to complain at the time, but I am appalled the in-fighting has not been resolved.  

Obviously, you can’t have a children’s hospital that doesn’t have any cardiac services; but at the same time, it shouldn’t ever be a competition between the two sites.

We received stand-out care from many of Teddy’s Sydney doctors, including his geneticist Dr David Mowat and private paediatrician Dr John Smyth, but we were failed by the hospital system itself.

It was wrong place, wrong time. And a wrong that should have been righted years ago.

Kerry ParnellFeatures Writer

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Kerry Parnell is a features writer for The Sunday Telegraph. Formerly the Head of Lifestyle, she now writes about a wide range of topics, from news features to fashion and beauty, health, travel, popular culture and celebrity as well as a weekly opinion column.