Support helps Maia’s family to thrive

December 4, 2021 BY

Everyday worries such as meeting developmental milestones was not something Geelong parents Tara Duke and Richard Govan had time to think about following the birth of their second child.

Maia, now three, was born with a rare genetic condition known as Propionic Acidemia which saw her spend the first few months of her life in intensive care at the Royal Children’s Hospital.

Critically ill, her shock medical diagnoses meant she was 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 early months were a rollercoaster ride of treatments, operations and appointments.

Maia was fed through a nasogastric tube and a pump that was constantly adjusted to check how much protein she could tolerate.

“When it was not working for Maia … she would go flat, grey and a lot of vomiting,” dad Richard recalled.

“The cycle that we were living was that as much she vomited, we would have to try to replace that amount.”

 

Maia and Sarah from BCYF’s NDIA Early Childhood team.

 

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 realised 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.

But thankfully that changed with support from Barwon Child Youth & Family (BCYF) and the National Disability Insurance Scheme (NDIS).

Now the family is setting goals and ticking them off, one at a time.

Maia is enrolled in kindergarten for next year – something Tara and Richard once wondered would ever be possible.

The family shared Maia’s story to mark tomorrow’s International Day of People with Disability in the hope of helping raise awareness of the supports available.

Maia was just over three months old when she returned home and a local paediatrician introduced the family to BCYF, who are the NDIS Early Childhood partner in the Barwon region.

 

Maia and her mum Tara Duke enjoy some play time together.

 

“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.”

Richard said BCYF took the time to understand the dynamic of their family of four.

“It helped us through a really tough time and got us forming some goals and understanding the supports available,” he said.

Helping develop Maia’s oral skills was a priority, along with other achievements such as 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.

At 20 months old Maia became the first child with her condition to have a liver transplant in the Royal Children’s Hospital.

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.

This allowed Tara and Richard to return to work part-time and even take a family holiday.

They say every achievement, even the little ones such as 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 was proud to be supporting families such as Maia’s.

“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,” she 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.”

For more information about accessing support through the BCYF and NDIA partnership email [email protected], phone on
1300 012 293 or visit the BCYF website.

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