Dialog Box

Barnaby's Story

Lisa and Dylan’s journey into parenthood has been shaded by anxiety and stress with the birth of their first child, Barnaby, who is now 2 ½ years old. Barnaby is a kind, inquisitive, sensitive, and fun-loving little boy who had a difficult start to his life when he was born in 2020 at the height of Covid lockdown.

Barnaby was diagnosed at just three days old with Ventricular Septal Defect (VSD), a form of congenital heart disease which means he has a hole in his heart. At 9 weeks old he underwent open heart surgery, and the family went through some serious post operation complications.

“We have been running on a high state of adrenaline since Barnaby’s birth and it has had a follow-on affect into our daily lives. We try and live in the moment but subconsciously we hold our breath in for Barnaby’s health, and I think we always will,” says mum Lisa.

“Barnaby has a beautiful nature and loves to think and ponder on things. He has a great memory and a developing sense of humour. He loves to smile and gets excited easily. He has a personality that we adore. He is doing well now but we are always anxious about what is around the corner and monitor his condition with annual check-ups,” says mum Lisa and dad Dylan.

Lisa and Dylan approached their second pregnancy with their daughter Edwina, who is now 13 months old, more cautiously after their first child’s diagnosis. They limit themselves more socially and are hyper vigilant about their health and lifestyle choices to support optimal health and wellbeing. Overall, they are a lot more anxious that they were prior to having Barnaby, and they know some of that is just what parenthood is, however, being held on the edge of life and death with their baby is something that will never leave them.

HeartKids has also been a huge support to the Craw family as soon as they got their diagnosis. They received a care package when they were in RCH which really brightened their day during an isolating time.

“We love being part of the HeartKids community and I think having parents who have travelled similar journeys helps in the healing process. It means a great deal to be able to have support there with people who understand the path you have walked,” says mum Lisa.


09 January 2023
Category: Ambassadors
Tags: #CHDAwareness #SweetheartDay #8toomany #4liveslost #1in100,
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