“I just want Taylor to be a kid and do kid things. To know what it feels like to play with other kids. To touch her feet to the grass and feel the prickles.”
Dianne Hicks and her child, Taylor Savva, 3, spend their days in Parkville, Melbourne, attending medical appointments and waiting patiently on the heart transplant list. But Dianne, and her paramedic husband, Colin, though eternally hopeful, acknowledge that Taylor’s chances of receiving a suitable heart are slender.
Taylor suffered a heart attack at two months of age and was eventually diagnosed with an abnormal heart rhythm that can lead to sudden cardiac death.
Taylor has been on life support twice. The last time, in 2017, she suffered a stroke while on life support and after three weeks the doctors suggested turning the machine off. “It was touch and go. We were crying. She was unconscious and not communicating,” Dianne explains. “When she did look at me, her eyes were empty. That’s the big risk of treatment.”
“We made the decision that if Taylor did not survive, she would become an organ donor herself,” Dianne says.
“We were very relieved when Taylor’s heart continued to beat after they turned the machine off,” said Dianne.
We’ve got things to do
Taylor stands up and looks around the room in smiling curiosity. “Mumma, Dudda,” she used to say before suffering the debilitating stroke, which left her with cerebral palsy and speech difficulties. Despite these significant set-backs she moves freely and happily from book to biscuit and back to book.
Taylor reaches up and smiles cheekily. She gets involved in everything despite her small size; she has not yet reached 10 kilograms. “Taylor has created her own percentile chart!” laughs Dianne. “But she’s not a doll,” she insists. “We treat her exactly the same as all our other kids.”
Smiling, Dianne says to Taylor “we’ve got things to do, like scrapbooking and cooking and reading books!” Nodding emphatically Dianne recites a Mem Fox favourite: “Little one, whoever you are, wherever you are, there are little ones just like you all over the world.” Hearing these lines from Fox’s Whoever You Are, Taylor’s eyes light up and her hands wave exuberantly.
Colin travels the five hours between their home in Robinvale and Parkville weekly or fortnightly to be with Dianne and Taylor. This means living away from the rest of their large family including three children, four foster children and eighteen grandchildren.
“The life here is very good,” says Dianne of her Melbourne digs, “with all the help and support we could want.” The Hicks family has been receiving palliative care from Very Special Kids for more than two years. Their practical and emotional support includes transportation, attending medical appointments, advocacy at medical team meetings, as well as a listening ear and respite care for Taylor so they can take an occasional weekend off.
Taylor knows what she wants
Taylor’s peachy skin and rich brown eyes call Dianne to the carport to stand in the splits of sunlight beside the nectarine tree.
“We know, inside, that life for us, Taylor and the rest of the family is in Robinvale. It’d be the best for Taylor, for her life as a child,” says Dianne.
Yet there are problems too with going home. “If I take her home without a transplant I wonder what would happen if she had a life-threatening episode. I worry that by the time a medical team arrives it will be too late and she’ll die.”
Despite the very sad possibility they might lose Taylor, they have settled on a decision: “At the end of the year we think we’ll take her home and continue to receive palliative care.”
“We want Taylor to be a kid and do kids things; to know what it feels like to play with other kids, and to touch her feet to the grass and feel the prickles.”
Taylor looks up at her grandmother and points to the door. “Taylor knows how to show me exactly what she wants,” laughs Dianne. Taylor tugs Dianne’s trouser leg.
“We walked Taylor down the aisle for my granddaughter’s wedding in November last year. She kept looking up at us with this big smile on her face. She was so proud of herself walking all that distance holding on to my hand. Guests were crying. It’s those moments that matter, day to day, that give her quality of life,” says Dianne.
Written by Roberta Shaw
Very Special Kids cares for children with life-threatening conditions by providing a children’s hospice and professional family support services. We help more than 900 families across Victoria with ongoing support from diagnosis all the way through to recovery or bereavement.