Oliver’s RCH journey: the diary of a heart kid

At 20-weeks pregnant, Jacinta attended her morphology scan to be told that something was wrong with her baby’s heart. It was soon revealed that her unborn son had a complex congenital heart defect called truncus arteriosus.

Jacinta and her partner Darcy were completely shocked and devastated to receive the news as young, healthy first-time parents. From this day, they knew their lives would change forever and so they began educating and preparing themselves for the long and challenging journey ahead.

Shortly after baby Oliver was born, the family were brought to the RCH by the Paediatric Infant Perinatal Emergency Retrieval (PIPER) service. Before long, the RCH’s dedicated cardiac area – Koala – became their new home.

“Oliver’s condition in simple terms means he has trouble oxygenating his blood properly. He underwent his first open heart surgery at four-weeks-old. Recovery was hard, long and complicated at times, but we were so supported by the RCH and the incredible teams they have,” said Oliver’s mum, Jacinta.

“Oliver was discharged at eight-weeks-old and was doing wonderfully! A lot of our care continued through the RCH – we had a team of 10 specialists who honestly became like family to us.”

During surgery, Oliver was given a conduit which helps his blood flow from his heart. This will need replacing for majority of his life, as surgery for congenital heart defects is not a cure.

Two years on, it was time for Oliver to endure his second open heart surgery. He was displaying increased symptoms of fatigue, sweatiness, changing colour and swelling. He was in heart failure – which was expected to happen.

“Our incredible surgeon Christian Brizard worked on Ollie for over 10 hours and helped make his heart so much stronger. Oliver spent 10 and a half hours on bypass, two days on life support and 10 days in hospital.”

“Oliver is now almost 2.5-months post his second open heart surgery and he is a completely new child. He has more energy, is more playful, has a real and true lust for life and is the healthiest he has ever been! Oliver has defied all odds placed against him, and we feel very blessed to have so many people who care about our boy dearly.”

Raising awareness and advocating for congenital heart disease (CHD) is now so important to Jacinta.

“CHD can affect just about anyone and knowing what to ask at your anatomy scan allows you to be as best educated as you can. We will always raise awareness and remember those who fought so hard to be here but no longer are.”

“We are so thankful for the surgeons and the entire team at the RCH for their tireless work on making our son as happy and healthy as he can be.”

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