Walking into the Emergency Department at the Perth Children’s Hospital with their sick two-year-old daughter Amelia, Brianna and Russell felt…
Foundation ambassador mums, Laura and Cara, have two things in common – the fragile health of their daughters, Charlotte and Hilary, and their location. They both live in Northam, one and a half hours from Perth.
(From Left – Cara holding Hilary and Laura holding Charlotte)
Laura’s daughter Charlotte was born with a diaphragmatic hernia. Her abdominal organs had pushed through a hole in her diaphragm into her chest cavity, occupying the space where her lungs should be. She had her first life changing surgery at only three days old.
A few months later, Cara’s daughter Hilary was born, also with complex medical issues. She was born with chromosome 9p deletion syndrome, a rare abnormality that occurs in 1 in 50,000 births. Hilary had her first surgery the day after she was born.
With Charlotte and Hilary requiring specialist care, the journey from Northam to Perth is a well-travelled one for Laura and Cara. Even minor health concerns can result in an unscheduled trip to PMH, putting financial and emotional strain on both families.
“Being separated from my husband and other daughter, Khloe, is hard,” explains Cara. “It can be very lonely for us at PMH”
Laura struggles with the impact of Charlotte’s medical needs on her other children.
“Due to hospital visits, Joshua, Isabella and Emma do miss out on some trips and outings as well as school and extra-curricular activities.”
But some of the pressure is relieved by the friendship that Laura and Cara have formed as a result of having high needs children. Despite living in the same town, they first met when Charlotte and Hilary were both admitted to PMH at the same time.
Providing each other moral and practical support, both mothers say that having someone that understands hospital jargon is invaluable.
It’s nice to have someone that really understands what is happening. To get empathy instead of sympathy can be a relief, states Cara
Laura agrees. “I like knowing that I’m not alone on this harrowing journey.”
Isabella and Khloe are in the same class at school and take ballet together. Isabella has stayed with Cara during one of Charlotte’s many hospital admissions.
“I love that Isabella is not the only one whose family is back and forth to Perth and whose life is dictated to by her sister’s ill health,” comments Laura.
The impact of a child with a chronic medical condition on family life can be profound. Spending the majority of the last two and a half years at PMH has meant that Charlotte and Hilary’s siblings have sacrificed playdates and family time, but neither family would change anything.
“We have been given many amazing opportunities because of Charlotte,” says Laura. “It’s nice to have developed a friendship with another parent who understands just what we go through.”