Many parents worry about their child’s progress and reaching developmental milestones, but for Geelong’s Tara Duke and Richard Govan, these everyday worries seemed a world away from their experience as parents caring for their critically sick baby girl Maia.
Born with a rare genetic condition, Maia’s first three months were spent in the intensive care unit at the Royal Children’s Hospital, then at 20 months she underwent a liver transplant. Her shock medical diagnoses and subsequent roller-coaster ride of treatments, operations and appointments pushed many everyday milestones into the background.
But with support from Barwon Child Youth & Family (BCYF) and the National Disability Insurance Scheme (NDIS), the family is setting goals and ticking them off, one at a time. Maia is now enrolled in kindergarten for next year – something Tara and Richard once wondered would ever be possible.
In the lead-up to International Day of People with Disability, celebrated annually on December 3, the family is sharing Maia’s story to help raise awareness of the supports available.
Three and half years ago, Tara and Richard were excited to give their daughter Luna a baby sister. After a relatively “straight-forward” caesarean birth at Geelong Hospital, it soon became clear something was wrong. Maia was lethargic, her breathing was laboured, and she was not feeding. A problem with her bowel or digestive system was suspected and she was rushed to the Royal Children’s Hospital.
At just 36 hours old, Maia underwent exploratory surgery, while mum recovered from her own surgery in Geelong. They found nothing “structural”, which at first sounded like good news, but the diagnosis was only the beginning of a long and difficult journey.
Maia has a rare genetic disorder known as Propionic Acidemia, which means she is missing an enzyme that breaks down proteins and lipids. The tiniest amount of breast milk could send her into metabolic crisis, risking damage to her brain and other organs.
Her first few months were spent at the Royal Children’s Hospital where Maia was fed through a nasogastric tube and a pump that was constantly adjusted to see how much protein she could tolerate.
“When it was not working for Maia…she would go flat, grey and a lot of vomiting. The cycle that we were living was that as much she vomited, we would have to try to replace that amount,” Richard explained.
Tara and Richard both stopped working to learn how to care for Maia in hospital and support each other – with no idea how long they would be there. Everyday life stopped and home for those first months was Ronald McDonald House.
“One of the things it’s hard to remember to do when your child is in hospital is the small developmental things that you would do at home,” Richard said.
“At about the six-week mark we realized she’d never lay on a mat on floor, we’d hardly cuddled her, and she didn’t spend a lot of time upright because she was so sick in a hospital bed,” Tara added.
Maia was just over three months old when she was finally able to return home and a local paediatrician introduced the family to BCYF, who are the NDIS Early Childhood partner in the Barwon region.
“Megan came in and just immediately made us feel comfortable,” Richard said.
“She chatted to us about Maia as a baby, not as a sick child, or a case or a client,” Tara added.
“She asked us about our goals for her…as a three-month old and for the next 12 months…and got us to think about what Luna, our older daughter, had been doing,” she said.
“I feel like BCYF took the time to understand the dynamic of our family. It helped us through a really tough time and got us forming some goals and understanding the supports available,” said Richard.
It was “refreshing” to have milestones to focus on and an optimistic outlook of what could be achieved with support and early intervention.
Feeding was going to be a huge challenge because Maia was connected to a nasogastric tube, so helping her develop oral skills was a priority, along with other achievements like rolling over, sitting, crawling, and eventually walking.
“We just had no idea what was possible – we’d been told that a lot of those things may not happen for Maia,” Tara said.
By the time Maia turned one, the family and their support team began planning for a liver transplant as means of treatment for Maia’s condition.
Maia was the first child with her condition to have a liver transplant in the Royal Children’s Hospital, so there was a great deal of additional planning and testing at the hospital in the lead-up – as well as the prospect of another developmental setback.
BCYF continued to work with the family to have supports in place for when Maia came home including respite care, access to therapies and equipment. Despite the pandemic and lockdowns, the family continued to access supports remotely and Maia has made great progress.
Tara and Richard have even been able to return to work part-time with the help of respite care for Maia and a recent milestone was their first family holiday. Every achievement, even the little ones like just watching TV and singing the “Bluey” song or asking for pizza, has special significance.
“By the time Maia’s in school a lot of other kids may not know the journey that she’s had to get there and sit next to her at school and it’s all because of the team that we’ve had,” Tara said.
Debbie Maddocks, Manager Early Childhood at BCYF, said the organisation is proud to be supporting families such as Maia’s, through its role as the community partner delivering the NDIS Early Childhood approach.
“We know the importance of a child’s early years and that providing families with access to early intervention supports, will give children with a disability or developmental delay better outcomes later in life,” Ms Maddocks said
“Maia’s story shows how when families are supported, they can give their children the best possible start in life.”
“As the Early Childhood partner for the NDIS in the Barwon Region, BCYF provides support to families with children under the age of seven, who may have a development delay or disability. If you have any concerns about your child’s development, we encourage you to contact BCYF,” she added.
For more information about support through the BCYF and NDIA partnership phone on 1300 012 293, email firstname.lastname@example.org.