Charlotte with staff from the NBH paedeatrics team NBH paediatric team helps transform care for Charlotte and her family
A new model of care at Northern Beaches Hospital is giving a local family greater flexibility and more valuable time together, closer to home. Two-year-old Northern Beaches resident Charlotte lives with Mitochondrial DNA Depletion Syndrome 4A, also known as Alpers syndrome, which is caused by a rare POLG gene mutation. The condition causes seizures that require a continuous infusion of midazolam, a fast- acting prescription sedative, to manage. After being discharged from the Sydney Children’s Hospital intensive care unit in July 2025, Charlotte transitioned home with support from the Sydney Children’s Hospital Network (SCHN) palliative care team in collaboration with the Northern Beaches adult palliative care team. Initially, her family needed to be home at 11am each day for a clinician to change the infusion. These visits often occurred while Charlotte was awake, interrupting her care, activities and family time. Delays also carried the risk of the infusion running out and breakthrough seizures occurring. But in May this year, a new approach was introduced through a collaboration between SCHN, Bear Cottage and Northern Beaches Hospital. Charlotte is now supported using a continuous ambulatory delivery device (CADD), a first-of-its-kind approach in NSW for this indication. The device allows Charlotte’s infusion to be changed every four days rather than daily.
Charlotte and her family now visit the Northern Beaches Hospital Paediatric Ambulatory Care Service twice a week for infusion changes and general clinical support. Charlotte’s mother, Jody, said receiving care closer to home had made a significant difference. “Having this support locally has been amazing for us. It means we can spend more time as a family with Charlotte, and it’s helped bring a bit more balance back into our lives,” she said. “We’re incredibly grateful for the support and for the extra moments it allows us to enjoy with Charlotte.” Acting Paediatric Ward Nurse Unit Manager Rebecca Mirabito said the Northern Beaches Hospital team had valued getting to know Charlotte and her family. “The initiative has also provided a valuable learning opportunity for our paediatric
nursing team, building their skills in CADD infusion devices and subcutaneous infusion processes,” she said. “Most importantly, the new approach is helping Charlotte’s family enjoy more uninterrupted time together and create valuable memories.”
Charlotte with parents Jody and Elliott enjoying a family trip
NSLHDNEWS | ISSUE 19| 4 OCTOBER 2024 NSLHD NEWS | ISSUE 12| 03 JULY 2026
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