Facing an unknown future
In the final week of her pregnancy, Heather and her partner Alberto were informed that their baby had enlarged ventricles in her brain. No one knew exactly what this would mean for Arianna.
Arianna spent the first seven weeks of her life in a neonatal intensive care unit receiving specialist paediatric care. The next 12 months were a confusing and frightening time for Arianna’s family. She was hospitalised several times for severe respiratory illnesses and, at just 11 months, she required emergency surgery to relieve excess fluid around the heart.
“It’s not what any mother wishes for their child,” Heather remembers. “I felt like my child was just constantly attached to machines …so it was really hard. Arianna’s future was completely unknown.”
Becoming a 24/7 carer
Adjusting to this unexpected and challenging new life during Arianna’s first year began to take its toll on Heather’s mental health. She found herself the full-time, round-the-clock carer of a child with special needs, while also looking after her three year old daughter, Erica. At the same time, Heather was trying to come to terms with the fears and uncertainties associated with Arianna’s as yet undiagnosed condition.
After months of extensive testing, Arianna’s doctors suspected Sotos Syndrome, a rare genetic disorder. Any respite from her role of carer, even for one day a week, seemed unlikely for Heather.
A chance encounter with staff of The Infant’s Home at a local shopping centre helped Heather realise that there may be help at hand.
Vin, the Director of our Murray House centre, explained that The Infants’ Home had the staff, facilities and expertise to provide care and education for children with additional needs within its five child care centres onsite at Ashfield.
Growing and learning at The Infants’ Home
When Arianna started in Murray House she was non-verbal, required tube-feeding and was unable to sit unsupported as she had very low muscle tone. Our integrated team of educators and allied health staff (including speech therapists, occupational therapists, social workers and a child and a family health nurse), worked with Arianna, her parents and her external therapists to develop a family support plan to meet Arianna’s health, safety and development needs.
Staff learned how to tube feed Arianna, and a customised chair was made to provide her with supportive seating so that she could participate in activities with the other children. Staff also learned how to put on and remove the brace that Arianna needs to wear for 16 to 20 hours a day to manage the scoliosis which is part of her condition.
Arianna began to achieve some significant milestones, from crawling at 14 months, to standing and walking with support, and finally becoming independently mobile and learning to eat solid food. Arianna is now in her third year at The Infants’ Home and is continuing to realise her potential.
The most recent milestone for Arianna and her family was an invitation for Arianna to attend her first play date with another child from Robinson House.
“That’s massive for us, because when you have a child with additional needs, one of your fears is whether your child will ever have friends,” says Heather. “I have always felt very included and supported. Arianna is valued here and that’s what’s important to me.”
