On Sunday, 18 October, the Snowden Family will be our angel family sharing their story and leading our Two Feet & A Heartbeat walk in Ipswich.
At 16 weeks pregnant, Victoria and Dane were told their baby boy had suspected Hypoplastic Left Heart Syndrome (HLHS), turning what they thought would be a routine scan into life-changing news. After many difficult conversations with specialists, they made the heartbreaking decision to have a medical termination.
Victoria shares their journey of love, loss and grief, and how HeartKids helped remind her that families impacted by childhood-onset heart disease are never alone.
Can you tell us about your family’s journey with CoHD?
When I found out we were pregnant, I was nervous because we were in the middle of planning an interstate move for my husband’s career. We had our 12 week scan the week before we left our home in Perth and were told that we needed another scan at 16 weeks to confirm a few things, as our little boy’s heart was measuring quite small.
We arrived in Queensland and the first thing I did was find a GP to organise the recommended scan. In my head, I just thought we’d got the dates wrong and perhaps our little boy was smaller due to that. I didn’t realise that at the 16 week scan, which we had naively booked on our living son’s second birthday thinking it would be a celebration, we would instead find out our baby had suspected Hypoplastic Left Heart Syndrome (HLHS). We were ushered into a room to meet with a professor who then referred us to a paedeatric cardiologist. We left the ultrasound dazed and upset, my mind racing a million miles a minute.
Needless to say, our son’s second birthday was not celebrated that day, and we are thankful he was too young to understand.
The cardiologist confirmed our baby’s HLHS diagnosis alongside some other factors, explaining the (lack of) quality of life our unborn baby could potentially have had. We hadn’t gone into that appointment naive this time, we had googled, we had read stories from other families impacted with both living children and children who had passed away.
My husband and I made the extremely difficult decision to have a medical termination. Those words “medical termination” seem so cold, medical and blunt in comparision to what actually took place in that hospital room. Every decision that lead us there was made from love, we carried the weight of an impossible choice so that our baby would never have had to carry the weight of pain. We will never wish for him to have suffered and we will never regret choosing love over suffering. There is peace in that decision, despite the ache and longing.
We gave birth to our sleeping boy in the afternoon of 8 February 2026. Losing my baby changed me forever, I experienced the kind of heartbreak that takes pieces of you with it, leaving you to carry love and loss side-by-side every single day. There are no words for the kind of grief that comes with losing someone before you even got to know them, and surviving a grief so heavy while learning how to be a new version of yourself that can love and grieve so deeply at the same time.
There is something especially cruel about loving and wanting your baby so deeply and having to say goodbye. Not just to them, but to the future you had started planning the moment you found out you were pregnant. You carried them physically for a moment, but you love them forever and you will carry them forever, in every quiet moment, every should-have-been milestone.
My baby mattered, my baby will always matter. His living brother will know him, and any future children we are blessed with will too.
How has HeartKids supported your family?
Finding HeartKids six days after giving birth to our sleeping boy felt like a sign, and finding out that eight babies are born every day with a heart condition gave me comfort in knowing that we are not alone in our pain.
Organisations like HeartKids become a lifeline and remind grieving families that they aren’t alone, no matter how dark the moments. They support families who need the same warmth, care and hope that I received during the hardest time of our lives.
What do you wish more people understood about childhood heart conditions?
Childhood heart conditions impact a family even if a baby doesn’t survive birth. The decision that has to be made, one way or the other, is one that will remain with the family, especially the mother, for the rest of their life.
Leaving a hospital with empty arms and an empty womb is incomprehensible. The fact that this occurs more often than is spoken about is an impossible statistic to comprehend. Any support that can be provided to a family, or to this organisation in support of families, is one that will not go unnoticed or unappreciated.
What would you say to another heart family?
Love doesn’t end when a life does.
To support families like the Snowden’s, register to attend your local Two Feet & A Heartbeat walk today.
