This October, Emilia and her family will join the HeartKids community at the Geraldton Two Feet & A Heartbeat walk.
Emilia was diagnosed with Tetralogy of Fallot at her 20-week anatomy scan, leading to specialist care throughout pregnancy, two heart surgeries and months of close monitoring.
Now thriving at home following her full heart repair, Emilia continues to amaze her family every day. Her mum, Nikky, shares their journey, the ongoing reality of living with childhood-onset heart disease (CoHD) and the unwavering support HeartKids has provided every step of the way.
Can you tell us about Emilia’s heart journey?
Emilia was diagnosed with Tetralogy of Fallot following our 20-week anatomy scan while pregnant. This meant frequent trips to Perth for specialist follow up during pregnancy, then relocating to Perth at 36 weeks. Within hours of being born at King Edward Memorial Hospital, she was transferred by the Newborn & paediatric Emergency Transport Service (NETS) to Perth Children’s Hospital for her first heart surgery. Returning home to Geraldton, she needed daily medication and twice-weekly doctor checks to monitor her oxygen levels and weight. At 3.5 months old, Emilia underwent her second heart operation for a full repair by open-heart surgery. She has been doing amazing since returning home and is thriving every day.
How has HeartKids supported your family?
HeartKids has supported us every step of the way since Emilia’s diagnosis. From practical support, emotional support (especially during Emilia’s second heart surgery) and connecting us with other local Geraldton Heart families, they have made our journey so far just that little bit easier.
What do you wish more people understood about childhood heart conditions?
Emilia has always looked healthy and you wouldn’t know she has a heart condition, except now she has a scar on her chest. But behind the scenes, the level of care she needs and the constant state of worry weighs heavily on us. Any support (practical or emotional) is appreciated beyond words.
What would you say to another heart family?
Find other people who understand the journey. It is an invaluable source of comfort and support, even if our individual paths are different.
To support families like Emilia’s, register to attend your local Two Feet & A Heartbeat walk today.
