When mother to two healthy daughters Sami Glastonbury went for a routine scan during her third pregnancy, she felt confident and curious - but like it was just a formality.
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Instead, she watched the radiographer's expression change.
"Your heart and your stomach sinks because you're looking at the face of the radiographer who's then wanting to get the radiologist in to confirm what they're seeing," Ms Glastonbury tells AAP.
Her son, Frank, was diagnosed in utero with a serious heart condition.
At 21 weeks pregnant, she was told her baby would eventually go into heart failure and need open-heart surgery to survive.
"You just really have to go through sitting in the reality of what that meant," she says.
"Of course, you think of the worst, unfortunately.
"You think, 'oh but I have these aspirations that this little boy or little girl will live a life like this ...' and the reality is that this is a lifelong condition.
"I don't think anything prepares you for that."
The diagnosis shattered what should have been a joyful time.
Living in country South Australia, Ms Glastonbury's pregnancy was public knowledge, with friends waiting to hear if she was having a boy or girl.
The homecoming was "confronting and challenging".
What followed was grief - not for her child but the life she had imagined.
"It's like you stop enjoying your pregnancy," she says.
Frank was initially allowed home but heart failure came, as expected, followed by repeated emergencies.
"I think I stopped counting how many times he turned blue after 12," Ms Glastonbury says.
"It was emergency ambulances and helicopters."
The family lived 90 minutes from the nearest paediatric hospital.
As Frank deteriorated, they were forced into a decision that tore the family apart.
She and the kids relocated to Adelaide and her winemaker husband stayed behind for work.
"Being closer to paediatric intervention outweighs the family unit," she explains.
"If you speak to a lot of heart families it's very common."
By then, survival was a full-time occupation.
"You become a real expert," Ms Glastonbury says.
"I always say I've got a PhD in Frank."
That hard-won expertise eventually changed the direction of her life.
Before Frank's diagnosis, Ms Glastonbury worked in wine industry marketing and sales.
Afterwards, it was about "keeping him alive for the first five years".
"Then you look at your skills and think how can you use them for the betterment of others," she says.
She became an advocate within the hospital system, joined the HeartKids state and then national boards, and lobbied to secure donations.
Today, she is the organisation's CEO.
Ms Glastonbury says the strength of the childhood heart disease community comes from the "heart families" that formed around it.
"Our journeys are different and unique but there's that understanding," she says.
"We weave together somehow."
Childhood-onset heart disease is an umbrella term covering lifelong heart conditions present from birth or acquired in childhood.
In Australia, eight babies are born every day with a heart condition and four young lives are lost every week.
An estimated 250,000 children, teenagers and adults live with CoHD, with about one million Australians affected including families and carers.
The conditions often require early surgery, ongoing specialist care and lifelong monitoring.
The emotional, physical and economic burden is significant.
HeartKids assists families at the point of diagnosis, through surgeries, throughout the school years and childhood milestones.
The organisation helps navigate hospital stays, supports siblings and checks in when children return home.
It also strives to connect with the potentially "catastrophic" 50 per cent of teenagers who would otherwise be lost as they transition to adult care.
This February, Ms Glastonbury is urging Australians to get behind Sweethearts for HeartKids during CoHD Awareness Week.
People can donate $8 to help support the eight children a day born with CoHD.
"It may seem a small gesture but when our community gives together, the collective impact helps ensure ... support when it matters most," she says.