Congenital heart disease survivor Jeanette Manson was a ‘blue’ child with cyanosis

WHEN Jeanette Mason was born with this complex series of congenital heart defects, her chances of survival were 50/50.

MEET Jeanette Manson. She’s a lovely woman. I know her. She’s now a social worker who has devoted herself to trying to help others.

She also has a ticking time bomb where her heart should be.

The heart is the body’s most vital organ. Without it your typical life expectancy is approximately 10 minutes.

Jeanette has a complex congenital heart defect called “Tetralogy of Fallots”, or more simply a “four heart defect”. It sounds serious and it is. Basically it obstructs blood flow to the lungs, which are those things we use for breathing – also quite important for survival.

When Jeanette was born with this condition, her chances of survival were 50/50. Those are pretty rough odds but at least for most people with TOF it’s the only heart defect they have.

Not Jeanette.

“I have others, but it just confuses people,” she says. She is pretty funny.

These others, she says, include something called “Arterial Septal Defect” and “Patient Foramen”. And she is right. I am confused.

What is not confusing is this. Jeanette was blue for the first nine years of her life.

Congenital heart disease survivor Jeanette Manson as a "blue" child with cyanosis.

Not depressed, not a redhead, and not just pale. Literally the colour blue.

It’s a condition called “cyanosis” – cyan being a fancy word for a blue-green colour – and it renders people the hue of an Addams Family member because of the lack of oxygen.

“I was blue until I was nine years old,” she tells me.

“I could not undertake normal kids’ sports or activities because I was blue and always got out of breath.”

Her first heart operation was at 13 months’ old to put in a shunt – basically a tube to divert the blood. It caused her lung to collapse.

At four years old she had a stroke because a blood clot passed through her heart and got to her brain.

The full repair didn’t happen until she was aged nine but there were complications.

“Nothing changed except I wasn’t blue anymore,” she says.

Told you she was funny.

Congenital heart disease survivor Jeanette Manson as a "blue" child with cyanosis.

And so there was another operation when she was 10. It was on her birthday.

For most of us a birthday is simply remembering when we first got life. Jeanette got life twice on the same date.

“Which is why my birthday is important to me,” she says.

But it didn’t end there. Just wait until you get to the teenage years.

“At 16 years I was told my pulmonary valve was failing and needed to be replaced,” Jeanette says.

“At that time the new technology was trying to use human valves and my heart valve came from a older gentleman who I have never met, but he had the heart transplant and I got his valve. This heart valve was supposed to last 10 years and so far has survived 29.”

Who knew that angels were sometimes old men?

And just when you thought Jeanette’s story couldn’t get any more extraordinary consider this: Her last operation was supposed to be performed by a certain heart surgeon by the name of Victor Chang. Yet before he could undertake it he was gunned down next to his car in the North Shore Sydney suburb of Mosman.

I mean, seriously.

Congenital heart disease survivor Jeanette Manson today.

I have known Jeanette for years – she has been a regular in the audience at Studio 10 since it began 1000 episodes ago and a beloved part of the show’s family – but I only found all this out when she mentioned in passing that she was now the face of a campaign to help up to 90,000 people with congenital heart conditions right around Australia.

Every day in this country, eight kids are born with congenital heart disease and four people die from it each week. And there is no known cure.

It’s also something that is rarely ever reported on and little known about. In an effort to fix this, a groundbreaking new program is being launched today – the first national congenital/childhood heart disease registry.

It is a joint initiative led by the Congenital Heart Disease Alliance of Australia and New Zealand and funded by a group called HeartKids. It is desperately needed in order for clinicians and the health system to better understand of the impact, treatment and outcomes for an estimated 65,000-90,000 people living with congenital heart disease in Australia.

And of course the CHAANZ Chairman is Professor David Celermajer, who happens to be Jeanette’s own cardiologist. This woman is more connected than the Prime Minister.

The organisers are asking any of these tens of thousands of Australians to take part in a survey and register at www.CHAANZ.org.au to try to beat this strange and often deadly disease.

Incidentally, one of Jeanette’s symptoms is that her heart sometimes skips a beat. After hearing her story yours will probably do the same.