48 days of love: A mother’s walk of courage for Canberra’s tiniest patients
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One Canberra woman has set herself a huge goal of walking 48 consecutive days throughout March, April and May to help Canberra’s tiniest patients.
It’s all dedicated to honouring the memory of her much-loved baby boy Alfie, who passed away in September 2024 after spending 48 days fighting for his life alongside his twin brother, Oscar.
Alfie and Oscar’s mother, Ashleigh McKenna, says that the walking challenge represents the time Alfie was here on earth and – after her family spent a total of 150 days in the Neonatal Intensive Care Unit (NICU) and Special Care Nursery at Canberra’s Centenary Hospital for Women and Children – it’s her way of giving back.
“On 26 July 2024, we welcomed Oscar and Alfie into the world: identical twin boys born extremely prematurely at 25 weeks and four days following a series of major pregnancy complications,” she says.
“They became Canberra’s youngest and tiniest residents at the time, weighing in at 788 grams and 740 grams respectively.”
She describes the NICU as tumultuous, unpredictable and involving a complex rollercoaster of emotions. Experiencing everything from love to joy, hope, guilt, sadness, shock, hopelessness and fear, Ashleigh and her husband tried to prepare themselves for a long and challenging journey in the NICU.
But as the boys underwent many medical procedures, intervention and diagnostic tests, totalling 174 blood tests, 14 blood transfusions, 31 cannulas, 8 central lines, 22 scans, 36 X-rays and 37 infusions between the two of them, she admits nothing could have helped them anticipate the highly traumatic and distressing experience.
“Everything a new parent imagines for their newborn baby is entirely different [in the NICU]. For me, it included meeting my babies many hours after their birth with tubes and wires all over their tiny bodies in incubators; waiting six days for the first skin-to-skin cuddle with Alfie, and 13 days with Oscar; and enduring the heartbreak of leaving my babies at the hospital each night,” says Ashleigh.
The fight of a lifetime
In Australia, more than 26,000 babies are born premature each year. Up to 1,000 of those babies will lose their fight for life.
Pre-term birth carries a higher risk of neonatal problems compared to those born after 37 weeks gestation. Associated with perinatal mortality, increased risks of physical, learning, behavioural and respiratory problems and neurological impairment, and readmission to hospital in the first year of life, Oscar and Alfie were in for the fight of a lifetime.
Ashleigh says there were some magical and special moments in the NICU too, mixed in with the heartbreak – cuddles with mum and dad, twin cuddles, visits from grandparents, and many stories read. And with each week that passed, they would celebrate being one step closer to bringing their twin boys home.
Then their absolute worst fears became a living nightmare when Alfie suddenly became critically unwell after six weeks in the NICU at the gestational age of 32 weeks. He passed away on 12 September 2024.
“Alfie had developed necrotising enterocolitis also known as NEC, a serious and devastating intestinal disease. NEC is one of the most common causes of death in babies born prematurely,” explains Ashleigh.
“Alfie was the bravest, most courageous, sweet and gentle boy. His 48 days on earth were filled with so much love, many cuddles, and lots of books. Despite the odds stacked against him, he gave his all until the very end.”
“Words cannot describe the heartbreak, devastation and pain of losing our beautiful boy Alfie. We will always wish more than anything that he could have stayed with us for a wonderful, long life: the life he deserved, side by side with his identical twin and best friend, Oscar.”
Oscar spent a total of five months in hospital before being discharged home before Christmas last year, with a nasal gastric tube for feeding and on home oxygen to assist with his breathing.
Today, at just over five months corrected, Ashleigh says he is thriving and weighs more than six kilograms (almost eight times his birth weight). He brings his family immense joy and Ashleigh describes him as a miracle baby in every sense of the word.
Touched by Alfie
Inspired by the strength, resilience, and courage of Alfie, Oscar, and all babies in their fight for life, Ashleigh is walking between five and 10 kilometres in rain, hail or shine with Oscar in the pram, for 48 consecutive days.
“Alfie touched the lives of many during his time on earth, and his legacy of love, magic and bravery will touch the lives of many more.”
Raising funds to help critically ill and premature babies, all the money raised by Ashleigh will go directly to the Newborn Intensive Care Foundation to buy lifesaving equipment and fund research and education to continue to help families in Canberra, just like theirs.
Oscar and Alfie had access to world-class medical care and equipment at The Canberra Hospital. She says that when the boys were in hospital, she found out that most of the machines that kept her boys alive were funded by the Newborn Intensive Care Foundation. That’s why 100 per cent of funds raised by the Foundation go directly to helping sick and premature babies from the Canberra region.
2025 marks 30 years of the Foundation funding life-saving medical equipment to ensure babies get home from the hospital sooner and healthier. Over 20,000 babies from the Canberra region have benefited from the Foundation.
Ashleigh remarks that the care provided to Oscar and Alfie was exceptional.
“It’s not an experience you would wish upon anyone. But something that I see as a gift coming out of NICU has been the extraordinary people who touched our lives. All of the neonatologists, doctors, nurses, the dedicated NICU lactation consultant and other staff – they are angels that walk the earth. They are full of care, compassion, kindness, love and support, and are incredibly talented.”
Ashleigh says her family will always have an overwhelming amount of gratitude for them.
And as for her message to other families?
“Take it day-by-day. The NICU journey is a marathon. Celebrate the small victories and milestones and cherish the time with your precious baby. There will be days when your baby may be too fragile to hold, but don’t underestimate the critical role you can play in their care and the love, strength and positive energy you bring to help them grow and thrive.”
“Your baby will know that you’re there. They know your voice. They know your smell. Do all the little things that you can to create those beautiful memories: get footprints and handprints taken, read stories to them, talk to them, and cuddle them on those days you can. You are brave and strong – just like your baby. I think that would be my message to parents that have a baby in the NICU.”
To keep up with Ashleigh and Oscar’s journey and learn some insights into the challenges premature babies face in the NICU, visit @touchedbyalfie on Instagram. You can help with Ashleigh’s fundraising efforts by making a donation through her GoFundMe page.
