Congenital heart disease (CHD) is the biggest cause of death of babies under 12-months-old
Eight babies a day are born with childhood heart disease in Australia and there is no known cure
Baby boy Nate was born in 2016 with a CHD and sadly died at 19-weeks-old from a pulmonary vein stenosis.
Liam Mackie, 26, was born with a CHD and grew up with a love for soccer and offers hope to other families
His mum Kim has been working as a HeartKidsFamily Support Coordinator for 10 years
HeartKids is encouraging people to donate on Sweethearts Day on February 14 to help children with CHD
At first glance there doesn’t appear to be anything wrong with these smiling babies and toddlers; the only giveaway is the thin pink scar running down the centre of their chest.
Congenital heart disease (CHD) is the biggest cause of death of babies under 12 months of age and there is no known cure. Eight babies a day are born with childhood heart disease in Australia.
Some make it into adulthood and live long and happy lives, but for others their time is far too brief.
Nate was one of these babies, his mum Amelia Clarke, 24, discovering something was wrong when she was 36 weeks pregnant.
The baby boy had range of defects including Supra cardiac TAPVD (Total Anomalous Pulmonary Venous Drainage) meaning his pulmonary veins which carry blood back to the heart after it has circulated through the lungs, are not connected to the left atrium.
Nate also had Aortic Coarctation, Atrial septal defect (ASD), Hypoplastic Aortic Arch and Pulmonary vein stenosis.
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‘When we found out, they said it could be good news and that he may not need surgery, or it could be bad and he would need to be operated on as soon as he was born,’ the Queensland local told Daily Mail Australia.
Nate was unfortunately the latter and when he was just seven-hours-old he was rushed off to have eight-hour-long surgery at Lady Cilento Children’s Hospital to repair the defects.
‘I didn’t even get a cuddle,’ Ms Clarke said.
The young mum didn’t get a cuddle until her little boy was two and a half weeks old.
His body and kidneys had started to shut down, so they had to let him rest, and allow the many tubes and wires attached to him to provide him with the medication and support he needed.
Finally after three week in intensive care and another two up in the ward, Ms Clarke and her husband Nick got the news that the could take their baby home.
But routine tests performed before he could be discharged revealed pulmonary vein stenosis and the tiny tot had to have his second open heart surgery at just six-weeks-old.
He could finally go home nine weeks after he was born, but various complications sent the small family back and forth form the hospital a number of times, including Nate’s third surgery at when he was 11-weeks-old.
Then, after being admitted to palliative care, Nate passed away at 19 weeks old on 19 July 2016 due to pulmonary vein stenosis.
He was the happiest, funniest, cheekiest little baby,’ Ms Clarke told Daily Mail Australia.
‘Any of the nurses could tell you, he pulled the funniest faces.’
Nate’s his grandfather got a tattoo in memory of the baby boy and as a symbol for all heart kids.
Ms Clarke got one too, showing Nate’s actual heart rhythm.