baby - congenital heart disease

Lara's story: Surviving CHD

Kirsteen dreamt the happy dreams of any expectant parent. But 13 weeks into her pregnancy she received a phone call that shattered her dreams – something was wrong with her baby. After a second scan doctors told her that her unborn child was the unlucky one in a hundred – she had a congenital heart disease (CHD).

Congenital heart disease - a battle of survival

Newborn Lara after being born

On hearing the devastating news Kirsteen and Kevin knew their life would never be the same. They knew they were facing a battle of survival. And they took action, immediately. They moved to Sydney to be near a hospital that could offer highly specialised care their baby needed to survive. They asked questions about the cause of the disease but no one could give an answer. Each night Kirsteen and Kevin would lie in bed, saddened by the thought of what they would do if their baby died. It strengthened their determination to do everything possible to save their baby.

Lara is now an active, typically naughty little girl, unrecognisable from the tiny baby, who was so terribly ill. Only ten days after she was born she had her first life-saving operation. A second one followed 5 months later because Lara was not growing. She’d only put on 800 grams, her skin was grey and on numerous occasions Kirsteen and Kevin had to rush her to hospital for emergency procedures.

A second operation changed everything. All of a sudden Lara’s skin turned pink and she started putting on weight, so quickly that Kirsteen thought she would burst out of her skin! Now she can join in and play with other kids her age.

Only now can Kirsteen look at the photos of Lara in hospital as the experience is still so raw. But she wants to share Lara’s story. “It will help people understand how important the research is at the Victor Chang Cardiac Research Institute. Because amazing medical discoveries saved my baby girl. “

Lara as a happy little toddler
One day she would love to tell Lara what caused her heart defect'- Kirsteen

You can help kids like Lara 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