Support young family dealing with terminal heart newborn.
Palmerston North, Manawatu-Wanganui
At our 20-week scan, we were excited to learn a baby boy would be joining our family - but it quickly turned into heartbreak when the sonographer said she suspected a serious heart defect. Further specialist scans in Wellington and Auckland confirmed Hypoplastic Right Heart Syndrome (HRHS), a rare condition where the right side of the heart is severely underdeveloped and cannot pump blood to the lungs. Our baby only has one left ventricle as the right is non-functioning, he also has a narrowed aorta and Transposition of the Great Arteries (TGA).
Our family was given three devastating options: late termination, comfort cares when born, or attempting a series of three high-risk open-heart surgeries to help his heart function with just one pumping chamber. These surgeries are: The Norwood – within the first week of life., The Glenn – around 4–6 months old., The Fontan – around 3–4 years old.
After confirming that everything aside from his heart was normal, we’ve chosen to give our baby every chance at life. This has meant relocating to Auckland — home of the only paediatric cardiac hospital in New Zealand — six hours from our home in Palmerston North, so that our baby can receive immediate care.
After the first surgery, our family will be split between two cities: Caleb returning to Palmy with our two daughters for work, school, and daycare, while I stay in Auckland with our newborn until the second surgery.
We are funded for accommodation by Ronald McDonald house, they look after families with children in hospital with serious conditions. It doesn’t cover food, and we are paying our mortgage and bills back home.
Travel costs, hospital parking, mortgage, bills, extended leave without pay, and essential living expenses. And, if the unthinkable happens, funeral costs for our baby boy.
Content warning: Hospital photo below — shows medical lines and equipment. 18 October 2025
This is our little fighter, Myles, right after his Norwood open-heart surgery at Starship last Sunday — on his due date. The surgery was delayed a day due to an emergency admission and because our boy was stable enough to wait. His chest is still open here for swelling, which is a normal part of recovery at this stage.
It’s confronting to see, but this is the reality of what babies with complex heart conditions like Hypoplastic Right Heart Syndrome go through. Despite everything, he’s fighting so hard — crying again, holding oxygen levels in the 80s, and amazing his care team every day. 💙
At just five days post-surgery, he’s had all his stomach drains removed, come off cardiac support, and has even been placed on the waitlist to step down from PICU once a bed becomes available. It’s hard to believe, looking at this photo, how much recovery he’s made within one week. Today he even wore his first outfit now that most of his lines are gone. 🤩
We’re sharing this to show the strength of these little hearts and the incredible work of the team caring for him. Thank you to everyone who’s been sending love, prayers, and support — it truly keeps us going through the longest days and nights.
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