Barnaby Craw: The Legana boy born with a hole in his heart

“It was the longest day of our lives”: The mum of a Tasmanian boy who only weighed 1.6kg at birth and had a gaping hole in his heart has shared her family’s tale of trials and triumph.

Legana's Lisa Barnett with Barnaby (30 months old) and Edwina (18 months old) Craw at their Legana home. Picture: Alex Treacy

It’s a Tuesday morning and there are cheerful scenes at the Craw household at Legana, in Tasmania’s north: young Edwina is munching on apple chips, while her older brother Barnaby is in potty training.

However, as mum Lisa Barnett told the Mercury, when Barnaby was born in May 2020 with a gaping hole in his heart – known as a ventricular septal defect – in the midst of the Covid lockdown and following a catastrophic pregnancy, such a happy outcome seemed unlikely.

“He came out at 1.6kg after nearly 36 weeks,” Ms Barnett, a trained physiotherapist, said.

“Barnaby threw our world upside down”.

Barnaby Craw in hospital. Picture: Supplied

Ms Barnett’s pregnancy was plagued by intra-uterine growth restriction – Barnaby wasn’t growing – and he saw his first days from the inside of a humidicrib at Launceston General Hospital’s Special Care Nursery.

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He was already being monitored closely, which was how the doctors heard the murmur within his tiny chest on the third day of his life: he had a hole in his heart.

“We (myself and husband Dylan Craw) were devastated,” Ms Barnett said.

Barnaby Craw. Picture: Supplied

“I remember being absolutely shattered and thrown into a world of chaos. We were initially not sure of the plan, open-heart surgery was on the cards... It was such a big hole.”

When Barnaby went under the knife aged nine weeks’ old at Melbourne’s Royal Children’s Hospital, “It was the longest day of our lives,” Ms Barnett said.

The surgery “went well,” but there were myriad “complications which weren’t expected by anyone”. It meant Barnaby, Dylan and Lisa spent five weeks in hospital at a time when visitors weren’t allowed and only one parent was allowed in the room at any given time.

It was a period in Ms Barnett’s life where the smallest gesture could make the world of difference.

“People reaching out, friends from all over Australia (Ms Barnett is from Lismore originally) and the world, with that little message, a show of support, sometimes that one message can put a smile on your face,” she said.

“But the hardest part was not being able to have that family contact.”

The 12 months post-recovery from Barnaby’s surgery were “really hard,” but fast forward 18 months Barnaby is exuberant.

Lisa Barnett with husband Dylan Craw and their children Edwina and Barnaby. Picture: Supplied

“He’s an inquisitive little boy, he listens and ponders,” said Ms Barnett, who attributes that characteristic to his months of laying in hospital unable to play and learn.

He is “energetic” and has a “kind nature,” and, so Barnaby told the Mercury, “loves chippies”.

The mission to get Barnaby into the world and make his heart work properly has left Ms Barnett with a “fierce, protective love” of her son, she said.

It's also taught the family “resilience”.

“The show must go on, even when it’s not necessarily pretty,” Ms Barnett said.

Ms Barnett shared her family’s story in advance of February 14, which is Sweetheart Day for HeartKids, a national charity that supports children born with congenital heart disease and their families. HeartKids is selling Valentine’s Day cards online for $10 to support its work.