Meet Harry

24th October, 2018

Mending Harry’s Heart

The incredible story of the surgeries that gave the Munro family a new beginning. 

 

HARRY Munro’s parents have handed him over for open heart surgery four times in as many years. You would think it would get easier for Simone and Chris Munro to get through each surgery, in a series of staggered repairs, to fix the plumbing of their eldest child’s broken heart. 

But the parents of “heart kids”, who have eight new Australian families joining their ranks each day with a diagnosis of a congenital heart defect, will tell you that each time it gets worse.

At first, you hand surgeons your three-day-old child; a newborn you have not yet got to know or allowed yourself to bond with during the pregnancy. Next, you give them back around three months — when your child knows your voice, when they are starting to smile — so surgeons can trace the same “zipper” scar. Finally, at age four — when you have loved and nurtured this little human with more than 1400 goodnight kisses — you hand them over again for the final surgical fix.

“It was so much harder this time because he’s ours,” Mr Munro said. “We know him. He’s alive. There is so much more to lose.”

But after the definitive surgery at the Royal Children’s Hospital five weeks ago, a Fontan procedure to channel Harry’s “blue” deoxygenated blood through his lungs so the right side of the heart could pump the “red” blood around the body, his parents are now allowing themselves to plan for the future.

“We’ve always said this is when we can get on with the rest of our lives,” Mr Munro said. “He’s still got quite a lot of recovering to go, but it’s the beginning of the end, and the start of the new beginning.”

THE chatty sonographer suddenly turned quiet as he moved his Doppler over Simone’s stomach for the 20-week scan of their first child. It doesn’t look like the heart is working properly, he told them.

 

Their baby was diagnosed with Hypoplastic Left Heart Syndrome, one of the most severe congenital birth defects where the child essentially has “half a heart” that can’t support the circulation of the body.

It’s not an easy surgical road. There are no guarantees of success, so many parents choose to end the pregnancy at this point. Others support their child with palliative care after birth.

“We didn’t have to talk about it,” Mrs Munro said. “We knew that as long as he had a chance, we’d give him that chance with surgery and let him decide what he wanted to do.”

When he arrived by emergency caesarean, Harry didn’t make a noise.

Mr Munro could only hold his son’s purple hand while doctors worked to stabilise the newborn so he could be transferred to the RCH. Mrs Munro was wheeled past her son for a fleeting touch of his hand before he was rushed to Parkville.

For three days, RCH staff kept Harry alive, by which time Mrs Munro was discharged from her maternity ward on the day of her son’s first surgery.

In a normal healthy heart, the left side pumps blood to the body and the right side pumps it to the lungs. But seeing Harry was missing the left side, he was surviving on tiny drips of blood getting through the “hole in the heart” between the upper chambers that closes in all newborns in the first hours or days after birth. 

“It was my first time seeing him, and it could have been the last time,” she said. “We didn’t know if he was going to live.”

That first surgery, the Norwood procedure performed by cardiac surgeon Yves d’Udekem, saw a shunt inserted between the pulmonary artery and the aorta so Harry could get blood out to the rest of his body.

Next, at 10 weeks of age, Prof d’Udekem completed the next intermediate procedure — directing blood into the lung circulation — towards the final operation. In June last year, at age three, Harry needed an extra procedure to ensure he was in the best shape for his definitive fix.

Prof d’Udekem and his team regularly consult the Fontan registry, a database they established of about 2000 Australian and New Zealand Fontan patients — now teenagers or adults — to help uncover who does well over the long term, whose heart fails earlier, and why.

They have found that in children with small pulmonary arteries — the vessels that carry deoxygenated blood from the heart to the lungs — they struggle at the time of the big Fontan procedure, and are more likely to need a heart transplant.

Prof d’Udekem was one of the first in the world to start offering these children an extra surgery before the Fontan, to increase the size of their pulmonary artery.

HARRY is now back at home in Mt Martha, and his parents can see his personality and energy levels start to slowly return.

He will be monitored at the RCH for the rest of his childhood.

Breakthroughs into artificial hearts, better ways to transplant donor hearts and experimental use of stem cells injected into the infant heart during the initial surgery, are all options being worked on by RCH surgeons and their international colleagues to keep Fontan children living long, healthy lives.

Simone and Chris have allowed themselves to talk about holidays for the first time, and are starting to remind a sore and tired Harry — still recovering from his latest surgery — of all the fun that awaits him now his heart is fixed.

“He can be a normal kid now with lots of energy,” Mrs Munro said.

 

Originally published in the Herald Sun, Friday March 30, 2018. 
To read the original story, visit the Herald Sun website

Words: Brigid O’Connell

Images: Jason Edwards

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