Chloe's story: Hypoplastic Heart Syndrome
"It was the morning of my 20 week ultrasound and my husband and I were so excited to find out if we were having a baby boy or girl. We had no idea that our lives would be irreversibly changed that day.
Our baby was diagnosed with hypoplastic right heart syndrome and tricuspid atresia. It was the first time I’d ever heard of it... The rest of the pregnancy was tumultuous and full of anxiety and fear, highs and lows, as we tried to grapple with what this meant for our future. And her future… It was a girl!
It’s just over four years later and as I write this, I'm sitting by her bedside in hospital where I’ve been sitting for the last seven weeks.
In her short little life, I’ve sat by her hospital bedside far too many times! Her first heart surgery was at four weeks old, her second at six months old and now she’s four and has just had her third open heart operation. This one has been the most difficult and I've had to summon the strength to carry her through it.
The days I’ve had to mobilise her while she’s had three chest drains connected to her, and was in so much pain, are days I'd sooner forget. But her resilience has taught me so much. This little four year old girl, who will get up and walk because her mummy is holding her hands and cheering her forward , gives me strength, despite my tears that lurk beneath the surface. I always make sure she sees my determination so that she feels the same.
For me, it's some kind of strange normal to know the beep of a machine. To see the wires and tubes connected to her. To watch my baby fight for her life! Putting her life into the hands of her surgeons, followed by the agonising wait to hear how it went... it’s shattering. I cuddle her while she falls asleep knowing that it will be weeks until I can cuddle her like that again. In my head I send silent prayers begging that she will be safe.
There's always a part of me that fears the worst but I never articulate it. I don't want to realise it could be a reality. I've sat with my husband in the children’s intensive care unit while machines breathe for her, knowing that the next part is even worse... the recovery and helping her back to full health. There are difficult times ahead where we watch her cry through more procedures... too many procedures to count.
Four years ago I had no idea children could be born with half a functioning heart and survive! I marvel at her spirit. Each day my husband and I celebrate the walking miracle we have in our lives. The smallest of milestones bring the happiest tears," - Tamarra, Chloe's mum.
You can help kids like Chloe by supporting vital discoveries at the Victor Chang Cardiac Research Institute.
Acknowledgement of Country
The Victor Chang Cardiac Research Institute acknowledges Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.
