Jesus' Story:
Congenital Heart Defects

Jesús was a baby born with a congenital heart defect

This story is in honour of his short but valued life, and the resilience Jesús and his family showed.

Jesús' Parents

Jesús' (pronounced Hey-Zeus) parents had been trying for a year to get pregnant, so they were overjoyed to get their good news on Valentine’s Day. But their joy was short-lived.

Something strange showed up at his 18-week ultrasound. It looked like a throbbing diamond hovering above their baby’s chest. The discovery was alarming – their baby’s heart was growing outside his chest. This condition is called ectopia cordis.

How common are heart defects among infants?

Heart defects are unfortunately common among newborn children. With every four hours that passes, a baby is born in Australia with a heart defect. 

Sadly, Jesús was one of these newborns that couldn’t be saved.

Newborn Jesús

Apart from his heart being outside his chest, he also had Hypoplastic Left Heart Syndrome (HLHS), one of the most serious forms of Congenital Heart Disease (CHD).

A consequence of HLHS, is that the left side of his heart had failed to develop properly and could not efficiently pump blood

The two conditions occurring together intensified the situation, giving baby Jesús little hope. His condition was so serious it was believed he would be stillborn or live for only a few hours.

However, Jesús proved to be stronger than that. He was loved, hugged and adored for 15 and a half days by his parents and family, before passing away peacefully.

Jesús with his parents at the hospital
Jesús held by his parents

Without radical surgery or heart transplantation early in life, HLHS is inevitably fatal with current technologies. We want all babies to be born with healthy hearts.

Donate to Help Prevent Newborn Heart Defects Today

Acknowledgement of Country

The Victor Chang Cardiac Research Institute acknowledges the traditional custodians of the land, the Gadigal of the Eora nation, on which we meet, work, and discover.
Our Western Australian laboratories pay their respect to the Whadjuk Noongar who remain as the spiritual and cultural custodians of their land.