Victoria's Story: Long QT syndrome and cardiac arrest
How a new genetic test developed by the Institute is helping three generations of one family
When Victoria Macarthur-Stanham started suffering from recurring fainting fits, she put it down to keeping up with the demands of being a new mum and juggling a full workload.
But in March 2021 Victoria had a sudden cardiac arrest at home and was only saved by the heroic efforts of her husband, Tim who performed CPR for 16 minutes before paramedics arrived and defibbed her heart.
After a spell in the intensive care unit in Wollongong Hospital, Victoria was transferred to St Vincent’s Hospital in Sydney. She was seen by cardiac electrophysiologist Dr Nicholas Kerr, who is undertaking a PhD at the Victor Chang Cardiac Research Institute.
He quickly made the diagnosis of Long QT Syndrome - a heart rhythm disorder which can lead to sudden, uncontrollable and dangerous arrhythmias. After conducting screening on her immediate family, it was also discovered that both her mother Edwina, and her youngest daughter Indi also had Long QT.
Subsequently, both Victoria and her mum Edwina have been fitted with a combined pacemaker and defibrillator to mitigate their risk of a sudden cardiac arrest in the future. Genetic testing of Edwina and Victoria has also revealed they share a rare genetic mutation.
Their genes are now being studied by a team led by the Institute’s Professor Jamie Vandenberg who are trying to establish if this mutation is the one that is causing their Long QT. If proven, it will mean that other members of Victoria’s family can also undergo genetic testing that currently is unavailable to them. You can help accelerate this research and the development of these tests with your donation today.
“For a good chunk of time the miraculousness of my outcome masked the seriousness of the event itself. Yet it’s given me a substance to my life that can only be felt and understood when you’ve knocked at death’s door,” says Victoria.
In the year after her sudden cardiac arrest, Victoria got married, fell pregnant and gave birth to her second daughter, Indigo. A series of milestones she attributes to Tim and to Dr Kerr and his team.
It was one way to set the tone for an emotionally charged wedding. “It was overflowing with love - a huge party to bookend a harrowing period of time.
“For all of its warts, saving my life was without a doubt the greatest affirmation for choosing the person to share your life with,” she says candidly.
“It’s strange - you never really think much about the experience of living; until it’s all you think about. The results of the work being carried out by the Victor Chang Cardiac Research Institute are not only life changing, but life giving in its most pure form. I’ve been given the gift of time. Now I just want to do something hugely meaningful with it.”
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 ongoing spiritual and cultural custodians of their land.
