In the midst of a global pandemic, puppy-mad Madison (now 20 months), came into the world via an emergency C-section weighing just 4.01 pounds – and every ounce is important when you’re that little! Madison quickly became a frequent flyer to the children’s hospital with numerous admissions and several surgeries, and at this young age already has a hefty medical file. Even as we spoke with Mum Kylie and Nana Kay, Madison was recovering from her latest surgery to help her breathe and eat more comfortably.
Two weeks before she was born, a scan revealed a condition known as Duodenal Atresia, or Double Bubble Stomach, which threatened her ability to eat and absorb essential nutrients. So just hours after her birth, Madison was rushed into surgery, and for the following five weeks, Madison’s home became the Neonatal Intensive Care Unit (NICU). This was made even more difficult by the impact of COVID which meant that Kylie and Dad Matt, had to visit their gorgeous new baby girl separately.
As if Madison hadn’t already faced enough, she was later diagnosed with a hole in her heart as well as a Ventricular Septal Defect (VSD), a condition where two chambers of her heart don’t function properly causing blood leakage.
Winter illness can be extremely hard on Madison and earlier this year she was rushed to hospital, suffering from Croup which followed a previous bout of RSV that had turned into Rhinovirus. These respiratory infections are life-threatening for Madison due to her damaged heart and fragile airways.
Thankfully, Madison’s gastrointestinal issues have been largely resolved through the good care provided by the Te Wao Nui Children’s Hospital team. However, her cardiac future remains uncertain, although Kylie remains hopeful, explaining, “There will always be medical advancements and new technologies that come along that can help Madison and others like her.”
The dedicated children’s hospital team has become like a second family to Madison and her family. Her health is complex and her care is a team effort, drawing on the specialist knowledge and expertise of NICU staff, Cardiologists, Speech Language & Feeding Therapists, Geneticists, Orthopaedics, and a Development Therapist. The family also generously allow junior doctors to sit in on her examinations as a part of their training, recognising the rarity of her cardiac condition.
What makes Madison’s story even more heart-warming is that her extended whānau had previously donated to the children’s hospital, unaware of how profoundly significant the place would become for Madison.
Kylie has been collecting for the children’s hospital for the last few weeks and will also be rattling a bucket on Saturday. Please give generous when you see her and all our collectors out this Saturday, or DONATE TODAY to our Digital Bucket HERE. Your gift will help us provide essential specialist medical equipment and other resources that directly help children like Madison.
We thank Madison’s family for sharing their story and wish her all the very best for the future.