Dialog Box

Lillian’s Story

Lillian is one of our heart kid ambassadors for Sweetheart Day. 

The Harris family from Logan Reserve, Queensland gave birth to baby Lillian in 2018. Prior to being born, Lillian was diagnosed with congenital heart disease after concerns during her 16-20 week prenatal scan couldn’t identify her heart properly. Advised to wait four weeks, Angela went for another scan which identified her child would be born with a hypoplastic heart.

After Lillian was born via caesarean, heart complications quickly developed which required her to be transferred immediately to Westmead Children’s hospital. Lilian was quickly incubated in Westmead Hospital’s Grace Ward, the hospital’s newborn intensive care unit. By day four she had deteriorated further and underwent urgent Norwood surgery. Lillian remained in the intensive care unit for three months until she went into cardiac arrest which led to another open-heart surgery, undergoing the Glenn procedure.

When Lillian was five and a half months old, she arrived home for the first time but within 24 hours was admitted back to hospital. She was home intermittently between the hospital stays until the family made the decision to move to Queensland in order to support the family’s other children with the help of their grandfather.

After moving to Queensland, Lillian didn’t require any heart surgeries until February 2019, when a feeding tube was placed in her stomach. This caused lots of complications which resulted in her undergoing a third heart surgery. She continued to have complications which then required a fourth procedure 24 hours later. When cardiologists realised her heart wasn’t beating in a normal rhythm due to a leaky valve, a pacemaker was attached externally to help (which it did) until Lillian could have a mechanical valve inserted.

In January 2021, Lillian will undergo further surgery and require more check-ups.

The Harris family has been significantly impacted both mentally and financially, “I’m a single mother to five children so there’s no option but to keep moving forward. It’s a cruel thing to see your child suffering through this experience and knowing there is no cure,” said Angela.

HeartKids Australia has provided support to the Harris family since their introduction at Westmead Hospital in Sydney.

“HeartKids has helped with food vouchers, support, and someone to talk to. They are available in the ward to provide a shoulder to lean on and express how you feel. The support coordinators know what we’re going through and offer their support in so many ways,” said Angela.

Being cheeky, Lillian is like a little soldier who doesn’t show signs of childhood heart disease other than with her feeding tube and backpack. She holds onto her heart beads dearly as they signify what she has been through despite her young age.

“We have a lot of heart beads and each one individually represents different stages she’s had to endure including each of her surgeries. Every procedure takes a heavy toll for someone of her age,” Angela said.

She loves the wiggles and tries to keep up with her brother and sisters. A true Heart Warrior.

Eight babies are born with a heart condition in Australia every day. Almost 3,000 every year. Lilian is one of them. This Sweetheart Day, join us in the fight against congenital or childhood acquired heart disease and help raise awareness and funds.

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16 December 2020
Category: Ambassadors
Tags: #chdinbabies #chdawareness #sweetheartday #congenitalheartdisease,
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