This October, Willow and her family will be part of the HeartKids Two Feet & A Heartbeat campaign.
Her mum, Kimberley, shares the story of her four-year-old daughter and their family’s journey through diagnosis, open-heart surgery, recovery and the ongoing realities of childhood-onset heart disease (CoHD), as well as the support they have found through HeartKids.
Can you tell us about Willow’s heart journey?
My husband Micky & I learned of Willow’s congenital heart defect, Ebstein’s Anomaly, when I was 28 weeks pregnant. Willow was born at 33+6 weeks after developing Supraventricular Tachycardia (SVT), a dangerous abnormal heart rhythm. She spent weeks in the Royal Children’s PICU and Koala Ward, then at the local hospital, before finally making it home.
While waiting for surgery to be planned, Willow went into cardiac arrest at home at five months old. We resuscitated her while waiting for the ambulance to arrive. She was placed on full life support and spent weeks in the Royal Children’s Hospital PICU once again. After her open-heart surgery, she suffered a life threatening complication called disseminated intravascular coagulation (DIC).
Thanks to her fantastic medical team, Willow overcame this complication and recovered well. She is now four years old and, from afar, appears like most children her age.
How has HeartKids supported your journey?
HeartKids introduced themselves to us when we were on the ward with Willow after she was born. They provided us with a friendly face, support and information. Over our journey with HeartKids, we have crossed paths with so many wonderful families with heart kids through the events and fundraisers we have attended and hosted. Openly sharing our stories and our trauma of our journeys brings us all together and builds a bond that you cannot even explain. If someone’s child is sick, in hospital or needs surgery, you know you will do anything to support them in whatever way they need.
What do you wish more people understood about childhood heart conditions?
That it’s not simple. It’s developmental delays, regular appointments to doctors, specialists & allied health therapists. A lot of changed and cancelled plans from sudden illness or trips to hospital and so, so many scars. As much as we try to embrace everyday and be ‘normal,’ there are so many more layers of planning and questioning before making plans or going places. It’s important knowing where the closest hospital is and where the ambulance dispatch would be from.
What would you say to another heart family?
You’re never alone. You’ve always got HeartKids and fellow heart parents in your corner 💙❤️
To support families like Willow’s, register to attend your local Two Feet & A Heartbeat walk today.
