Margaux has spent six months of her young life in hospital already but that doesn’t stop her from pushing forward.
Shortly after Margaux was born, she was taken to the NICU at King Edward Memorial Hospital and immediately transferred to Perth Children’s Hospital (PCH), where she underwent heart surgery at just five days old.
Her mother, Kamahli, described this time spent in hospital as being very overwhelming and feeling incredibly isolated. Focusing on Margaux’s care, Kamahli stayed by her cot side from morning to night, returning only briefly to Ronald McDonald House for sleep.
Margaux’s father, Josh juggled the responsibilities of caring for their two older children away from their Bunbury home and struggled being separated from his daughter and wife for days or weeks at a time. Through the stress of the very unknown journey that was unfolding before them, family became distant, and Kamahli and Josh found it hard to reach out to their extended support network for help.
After Kamahli met the Kiind Peer Navigation team at the Family Resource Centre, she found comfort that there was a safe space to be vulnerable and express how she was feeling without judgement. The team helped Kamahli understand her family’s rights at the hospital and build her confidence to advocate for Margaux’s medical care and the family’s needs.
Access to assistance programs was limited while they awaited NDIS funding, and living outside the metropolitan area made them ineligible for many grants and services. Kamahli says that “everything felt so far out of reach.” The Kiind Peer Navigators supported the family by providing resources and reassurance that they would be there to guide them in finding relevant programs that would give Margaux the opportunity to thrive in life outside of the hospital.
Kamahli found Kind’s range of resources invaluable, particularly the Kiind Emergency Care Plan. Providing a template to detail medical needs, Kamahli was able to use the framework to consolidate the four-month long hospital stay and recognise the level of care that Margaux needed to be kept safe and feel prepared for discharge from the hospital.
I don’t know what I would have done that day without the Kiind team.
Kiind offered emotional support during the most challenging moments, including when Margaux needed open-heart surgery. The decision for surgery came suddenly in what was a routine clinic visit at PCH, leaving Kamahli little time to prepare. Desperate to be there for their daughter, Kamahli and Josh felt they couldn’t leave the hospital during the operation. The waiting areas were inadequate for the privacy the family needed, having their older children with them also. Turning to Kiind, they found solace within the Family Resource Centre to rest, regroup and gather the resilience to support Margaux through the challenging weeks ahead. Kamahli reflects, “I don’t know what I would have done that day without the Kiind team.” The operation lasted over 12 hours and was touch and go for three days following as Margaux remained on ECMO.
Since her surgery, Margaux has made significant strides, hitting milestones such as beginning to crawl and standing with support, and happily babbling. Kamahli says that Margaux opens up the world to all that meet her and continually challenges perceptions of disability with her strength and resilience.
The family still frequently travel from Bunbury to PCH for outpatient appointments and always take the time to stop by and say hello to the Peer Navigators at Kiind. These visits allow Kamahli to seek guidance for challenges they may be navigating at the time, however it’s mostly an opportunity for Margaux to visit her friends in pink and celebrate her milestones and achievements. And they did just that, when Kamahli and Margaux came to visit the Kiind office with cupcakes so together, they could celebrate Margaux’s first birthday.
