Hugh’s Story

Hugh, Regional NSW


Only two days after being born, Hugh’s breathing seemed rapid and had been put on oxygen after one of the nurses had noticed his colour had changed. The paediatrician was called, an x-ray ordered, and next thing you know, a flight was booked on a Neonatal Emergency Transport aircraft to Westmead Children’s Hospital in Sydney.

Hugh was diagnosed with a hypoplastic right ventricle (the right side of his heart had not developed properly), Transposition of the Great Arteries (TGA), a VSD and an Aortic Septal Defect (ASD). He also has one pulmonary artery that is smaller than the other.

Three days later Hugh had his first surgery. Since then, Hugh has had three more.

The HeartKids Family Support Coordinators made life easier with their visits and vouchers when expenses just got more expensive. Further Support from the local HeartKids team in Wagga Wagga was hugely comforting, knowing we would not be alone when we returned home.

Hugh is now an energetic 17 month old. He is meeting his motor development milestones, has a mischievous smile and enjoys testing the boundaries.

We have been so thankful to HeartKids for their support – it all makes a difference and helps relieve some of the pressure of having a child who is so unwell.


New South Wales