Twenty-one-month-old Olivia had the first of her three major cardiac surgeries at just seven days old.

Olivia’s parents, Carolina and Andre, found out there may be something wrong at Carolina’s 13-week scan.

“The sonographer went back and forth trying to get a good view of her heart – he mentioned he wasn’t able to see the right side of her heart and referred us to another hospital to have a specialised cardiac scan,” Carolina said.

“At 16 weeks we had the cardiac scan, followed by a conference with our obstetrician and The Royal Children’s (RCH) Hospital cardiologists – this is where we were told that Olivia had a combination of heart conditions – Hypoplastic Right Heart Syndrome, Total Anomalous Pulmonary Venous Drainage and Tricuspid Atresia.”

The diagnosis hit Carolina and Andre like a ton of bricks.

“We were already navigating a high-risk pregnancy due to Carolina being in kidney failure – this just added a whole new layer of complexity for the medical team,” Andre said.

For the surgical team to operate, Olivia had to reach 37 weeks and weigh 2.5kg however with Carolina’s kidney failure, her medical team didn’t think Carolina would be able to carry Olivia past 32 weeks.

The team told Carolina and Andre that they had a very high risk of Olivia not being at a gestational age that would be viable for any surgical intervention.

If on the slight chance Olivia made it, her complex condition would make breathing out of the womb impossible.

“If we saw the pregnancy through and she didn’t reach the appropriate gestational age, our only option would to be to make her comfortable while she passed away,” Carolina said.

Carolina and Olivia fought to get to 36 weeks and four days, with Olivia weighing only one gram less than her goal weight of 2.5kg.

Olivia and Carolina defied all odds, with Olivia having no issues breathing and the medical team were fortunately able to intervene.

At four-hours old, Olivia arrived at the RCH and within a week she was having her first of three cardiac surgeries.

“Olivia has taken each surgery and treatment quite well although it does take her body a while to heal and recover after surgery,” Carolina said.

“The medical team have learnt she recovers on Olivia’s time!

“We are so proud of Olivia’s courage – although she is scared of certain procedures, she still allows the team to go ahead with them and says ‘yes’ when they ask her if they can go ahead.

“We are proud of the way she knows the drill now. As soon as the nurses come into the room, she asks them to check her ID band, gives them a leg for her BP measurement and then asks for the ‘beep beep’ in her ears.

“Afterwards, the team gets a high five and a fist bump to say well done. She is incredibly determined, patient, and takes each hurdle in her stride.”

Olivia’s Congenital Heart Defect (CHD) keeps her busy, with regular hospital and community allied health appointments.

Due to her condition her oxygen saturations dip quite low, which restricts the amount of physical activity she can do. This is particularly challenging for a toddler who is learning to walk and run.

Despite the odds and obstacles that have come her way, Olivia is a happy, determined, tenacious, loving and adventurous toddler who adores meeting new people and exploring the world around her.

She loves playing with dogs, collecting flowers on her walks and is a little bookworm in the making.

For Carolina and Andre, they want Olivia’s future to be full of hope and gratitude.

“We want her to have hope for a future where she is not defined by her ‘limitations’ or ‘condition’ and is able to accomplish anything she sets out to achieve,” Carolina said.

“We acknowledge that she has a long journey ahead of her and at times it will not be easy however we want her to know that her life is miraculous and every day is an achievement worth celebrating.

“Having a child that is diagnosed with a CHD can be frightening as your child’s future seems so uncertain as it is a lifelong condition with no cure.

“However, we are so fortunate to have treatments available now to help our heart kids and we have amazing medical teams that are so much more informed around treatments and outcomes.

“With these interventions, support groups and developing research, we are able to care for our heart kids in progressive and holistic ways.

“We have an amazing extended family network of grandparents, aunties, uncles and cousins whose support has been invaluable throughout the journey.

“It’s so important to have people to encourage and build you up emotionally when you have a child in hospital.

“They have been our backbone and priceless support throughout this journey.”

On World Congenital Heart Defect Awareness Day, we are sending our love to all families like Olivia’s who have been impacted by CHD.