A mother from South Australia is calling for national advocacy after her son was diagnosed in utero with a serious heart condition. Sami Glastonbury, who was previously expecting a routine scan during her third pregnancy, faced a life-altering moment when the radiographer’s expression changed. At 21 weeks, she learned that her son, Frank, would need open-heart surgery to survive.
“The moment you hear that, your heart and your stomach sinks,” Glastonbury explained. “You think of the worst, and the reality is that this is a lifelong condition.” The diagnosis not only shattered her hopes for a joyful pregnancy but also transformed her family’s life.
Living in a rural area of South Australia, Glastonbury’s pregnancy was well-known among friends and family. As the news of Frank’s condition spread, the emotional toll became overwhelming. “It’s like you stop enjoying your pregnancy,” she recalled, noting that the impending challenges overshadowed the excitement of welcoming a new child.
Initially, Frank was allowed to return home, but as heart failure set in, emergencies escalated. “I stopped counting how many times he turned blue after twelve,” she said, recalling countless ambulance rides and helicopter rescues. With the nearest pediatric hospital located 90 minutes away, the family faced a heartbreaking decision. Glastonbury and her daughters moved to Adelaide for better access to medical care, leaving her husband behind to continue working.
“Being closer to pediatric intervention outweighed the family unit,” she stated. Glastonbury quickly became an expert in her son’s condition, humorously referring to herself as having a “PhD in Frank.”
Her journey, however, led her to a new career path. Previously working in wine industry marketing and sales, she shifted her focus to advocating for children with heart conditions. Glastonbury joined the boards of HeartKids at both the state and national levels, ultimately becoming the organization’s CEO. “You look at your skills and think how can you use them for the betterment of others,” she noted.
Childhood-onset heart disease (CoHD) refers to a range of lifelong heart conditions present from birth or acquired during childhood. In Australia, approximately eight babies are born each day with a heart condition, resulting in four young lives lost each week. An estimated 250,000 children, teenagers, and adults live with CoHD, affecting around one million Australians, including families and caregivers.
Early surgery, ongoing specialist care, and lifelong monitoring are often necessary, imposing significant emotional, physical, and economic burdens on families. HeartKids provides support from diagnosis through surgeries and childhood milestones, assisting families as they navigate hospital stays and check in on children once they return home. The organization also aims to connect with teenagers transitioning to adult care, a crucial stage where many may feel lost.
In February, Glastonbury is urging Australians to support the Sweethearts for HeartKids initiative during CoHD Awareness Week. The campaign encourages people to donate $8 to help support the eight children born daily 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 emphasized.
Through her advocacy, Glastonbury hopes to create a stronger support network for families facing similar challenges, emphasizing the importance of community among those experiencing the trials of childhood heart disease.
