Toddler Charlie smiling

Charlie's story: Congenital Heart Disease

Battling a life-threatening heart condition

Charlie is a happy, energetic 1-year-old.

He is cool and calm and takes everything in his stride. To look at Charlie, apart from being tiny, you would have no idea what he has been through.

Charlie at the beach

Charlie was born on the 29th of November 2016 after no complication and a healthy pregnancy. As time went on Charlie struggled to gain weight, despite a healthy appetite.

Three months later, he was admitted to Canberra hospital with an attempt to fatten him up with a nasal gastric tube. A chest X-ray was ordered and found Charlie’s poor little heart was 4 times the size it was meant to be. If we’d waited another week, Charlie wouldn’t have survived.

An echo showed hypoplastic aortic arch and multiple large VSDs. Charlie was rushed to The Children’s Hospital at Westmead in Sydney by helicopter.

Unfortunately, due to poor weather conditions Charlie went by himself, and a very nervous mum and dad drove down. He was in end stage heart failure.

After a fortnight of trying to stabilise his little body, he was finally strong enough for surgery. After a 10-hour operation, everything seemed to have gone pretty well. Two hours post-surgery, just as we were saying goodnight to Charlie his machines started going off. Charlie went into cardiac arrest.

The scariest thing was watching them do CPR on our tiny baby. Just as they were putting him on ECMO, our brave little man’s heart started beating on its own.

Charlie after his surgery

We had a few other scares over this time but after a few weeks, Charlie had come ahead in leaps and bounds and was finally able to come home.

Charlie had regular appointments with his nurse, Physiotherapist, Occupational Therapist, GP, Paediatrician and Cardiologist.

At 18 months old Charlie required further open-heart surgery. This surgery went exceptionally well and his recovery was much smoother.

Just before his 2nd birthday concerns about oxygen and blood flow led Charlie to more intervention, this time a cardiac catheter. Again, thankfully everything went well.

Today Charlie stills see his team of doctors regularly, and further surgery is a possibility in his future, but right now everything is going well and he is a happy, healthy little boy," – Kate, Charlie’s mum

You can help kids like Charlie by supporting vital discoveries at the Victor Chang Cardiac Research Institute.

Acknowledgement of Country

The Victor Chang Cardiac Research Institute acknowledges Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.

Victor Chang Cardiac Research Institute - The Home of Heart Research for 30 Years