At 13-weeks pregnant, Kristin and Lianne discovered that their son was facing a complicated congenital heart disease called atrioventricular septal defect (AVSD). They were devastated by the news and were told that he would require open-heart surgery at just three-months old to repair the defect.

During the pregnancy, Kristin was routinely checked to monitor the progress of their baby and everything was progressing as best it could.

However at 37-weeks, baby Alfie was delivered via C-section as he was unstable in the womb. Alfie was taken to the Special Care Nursey and Kristin and Lianne were able to bring him home after four days to meet his two older brothers.

After a week, Alfie started to develop laboured breathing and was rushed back to hospital. He was admitted to the RCH’s dedicated cardiac area – Koala – where they quickly realised baby Alfie was not going to make the three-month mark for his surgery.

Alfie’s heart was failing and he was moved into the Paediatric Intensive Care Unit (PICU) at just under three-weeks-old where he endured his first open-heart surgery.

Despite the team saving Alfie’s life, his AV valve could not be fully repaired causing ongoing breathing difficulties. It was back to Koala for Kristin and Lianne before Alfie’s heart was in failure for the second time, requiring a second open-heart surgery.

At first it appeared that this repair had been successful, but a two-week scan post-surgery revealed that Alfie’s AV valve was leaking significantly again. Kristin and Lianne were utterly devastated.

Alfie remained in hospital for the foreseeable future while the team helped him grow bigger and stronger.

“Our cardiologist A/Professor Andrew Davis said Alfie would let us know how long he could last until the team needed to operate again. Together with the team on Koala, we all worked together to get our little fighter Alfie as big and strong as possible” said Kristin.

At 13-weeks old it was time for Alfie to undergo his third open-heart surgery to attempt to repair his AVSD once again.

“As with every procedure, we were taken through what the operation entailed and were told the risks. Even though we had been through this before, we were as worried as ever” said Kristin.

“Alfie’s AV valve was able to be repaired and we were in hospital for 15-weeks. Without the team in PICU and Koala helping us every step of the way, Alfie’s recovery would not be possible and we wouldn’t be where we are today.”

After 102 days in hospital, Alfie was discharged from the RCH and was able to go home to his mums and brothers. Alfie has begun hitting milestones following his long and difficult journey and Kristin and Lianne are extremely pleased with his progress.

“Staying in hospital for such a long period of time has been challenging. It was physically and emotionally hard as individuals and as a family” Kristin said.

“Other families we have met on the wards have since become like family to us. They made us feel like we had a family away from home” Lianne said.

“When it all felt like too much, it was Alfie’s fighting spirt that kept us going. These babies are called heart warriors for a reason. Alfie always had a smile for the nurses when they came into the room – even behind their masks he could see that they were there to help him.”

“I had never heard of congenital heart disease before Alfie’s diagnosis and I never thought it would be something that affected me or my family. Like I am sure most other parents of heart kids, I thought it was something that happened to other people” Kristin said.

“This is why I feel so strongly in spreading awareness of congenital heart disease and Alfie’s story. This is also why Congenital Heart Defect Awareness Day means so much to us. There is no cure with surgery and medications, it is something that Alfie has to live with and manage for the rest of his life.”

“We want Alfie to be proud of his scars and the journey and fight he had to go through in the first few months of his life. We are so proud of what he has endured to be with us today. Even though we know he has more surgeries to come, we are enjoying every moment with him and will always be by his side in his journey no matter how old he is. Alfie will always be our heart baby.”