baby in hospital - heart disease

Noah's story: Born with heart disease

“17th December 2015, the day of our 20-week anomaly scan. The day we were told, “I’m sorry; there is something wrong with your baby’s heart”

I remember that moment so clearly. I could feel my own heart breaking hearing those words. I was completely and utterly devastated.

Our unborn son was diagnosed with a congenital heart defect known as Double Inlet Left Ventricle, which means that he only has one pumping chamber in his heart instead of two. He also has two other heart defects associated with it. We were told by the paediatric surgeons and doctors that once he was born, he would need to have a total three surgeries to correct his defect for him to have any chance of survival.

Newborn Noah after open heart surgery

When Noah was born, he spent one week in hospital both in the NICU and Special Care Nursery before we were able to bring him home, which as one and a half hours away. From there we had weekly appointments with our paediatrician, at 8 weeks old he was showing strong signs of deterioration, and at 9 weeks of age Noah had his first surgery.

At 8 months old Noah underwent his second surgery, this one was open heart surgery, not just open chest. It was again a terrifying and anxious time for us, we again handed our baby over to the surgeons and prayed with everything we had that everything would be okay and that the surgery would be successful.

If having a baby with CHD has taught us one thing, it is that these children are absolute fighters! They are amazing and so very strong.

Five-year old Noah

Noah is now awaiting his third surgery which will be around the age of 4-5. He will be 3 in March of this year and is a happy little boy who loves to do what every other 2-year-old boys love doing.

Staying on top of heart health is extremely important. Heart disease is so prevalent and unfortunately kills so many people.

"Research into heart disease is vital; we need to find cures for congenital heart disease so that babies can be born without having to endure what children with CHD do now. CHD is the biggest cause of death in infants from birth to 12 months of age," - Jodie, Noah's mum.

You can help kids like Noah 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