When single mum Nicole Mahoney’s twin baby boys arrived 12 weeks early, all her carefully laid maternity leave plans were thrown into disarray.

The twins, Angus and Hugh, were both born weighing just 1.1 kilograms and were not much bigger than a 500ml bottle of chocolate milk.

They needed to spend months in a neonatal intensive care unit after their birth in March 2020, with one staying three months in hospital and the other five months.

It was an incredibly stressful time, Mahoney told 9news.com.au, with large amounts of her days taken up with just waiting at the hospital to hold her babies.

“You were only allowed to hold them once a day, and at times they were too sick, so you couldn’t even hold them at all,” she said.

Mahoney, who now lives in Adelaide, was working as a government employee in NSW at the time and had planned to take 12 months maternity leave.

However, half of that time was taken up in hospital, Mahoney said, adding that she quickly realised how rigid the federal government’s paid parental leave scheme was.

“From the day that the boys were born, I had to use maternity leave. It had to start then,” she said. 

“I had 12 weeks of sick leave I accrued, but I couldn’t touch that. 

“The frustrating thing is that if they had been born then gone to hospital at day 1 for this amount of time I would have been able to use my sick leave to care for them and be with them, so why not in this circumstance?”

Mahoney said she spent much of the second half of her maternity leave taking the twins to medical appointments and protecting them from getting sick with their fragile immune systems.

“Even once you were out, you were just forever still at the hospital,” Mahoney said.

“They were also really susceptible to catching things.

“For childcare, they told me don’t put them in until they’re at least one. Just don’t do it, because you’re just risking re-hospitalisation.”

Mahoney is one parent joining a campaign from premature babies advocacy group Miracle Babies Foundation, calling on the Albanese government and Opposition to commit to changing the Paid Parental Leave legislation to include extra allowances for parents of premature babies.

Timed to coincide with the lead-up to the federal election, the foundation’s campaign is asking for primary carers of premature babies needing specialist care to be given an extra week of extra Parental Leave Pay for every week a baby is in the hospital beyond two weeks, with a maximum of 14 weeks extra pay. For fathers and partners, the foundation is asking for additional two weeks of extra Dad and Partner Pay.

Under the current legislation, eligible parents receive up to 20 weeks’ paid parental leave at the national minimum wage. Working dads and partners receive two weeks’ leave paid at the national minimum wage. The scheme will be expanded to 26 weeks by 2026, with four weeks reserved for each parent.

The campaign follows a parliamentary petition on the same topic lodged by the Miracle Babies Foundation in 2023, which received more than 10,000 signatures.

Following the petition, the Australian Public Service Commission enterprise agreement was updated to include additional leave for parents of premature babies, but this only applies to government employees. 

Miracle Babies Foundation co-founder and CEO Kylie Pussell said the current conditions of the parental leave scheme meant some parents of premature babies were coming home from hospital with no leave left.

“We believe that all babies should be going home from hospital with that same amount of parental leave,” she said.

Pussell said parents and carers of premature babies were already under huge financial strain, with many having paid for months of travel costs to and from the hospital, as well as eating out and accommodation expenses.

“It’s such a difficult time, and then when you get to baby’s discharge and you’ve got no pay parental leave left, we’re putting women in such a difficult position of perhaps having to leave the workforce because they have nothing left,” she said.

Pussell said the lack of extra support for parents of premature babies also meant some could be forced to put vulnerable babies into childcare before they were ready. 

“It’s putting parents in a really difficult spot,” she said.

Social Services minister Amanda Rishworth said she understood the unique challenges faced by families who had experienced the birth of a premature or sick newborn.

“Over the past three years, the Albanese Labor Government has delivered the biggest expansion to Paid Parental Leave since Labor first introduced the scheme in 2011,” Rishworth said.

“Our changes are providing families, including those with a premature or sick baby, with the support they need to manage care of their child in the way that best suits their circumstances.

“This includes arrangements to enable parents to take time off work together for longer and to provide the additional flexibility that helps families who have a child in hospital.”

Mahoney, whose twin sons are now aged five, said she hoped the government would reconsider their stance and increase the support for parents of premature babies.

“You’d be providing parents with the opportunity to actually spend that time with their kids that everyone else gets. It’s being taken away from them,” she said.

“These kids are very vulnerable, so being forced to send them back into childcare early, when they’re still very susceptible to getting sick and having serious sicknesses as a result of it, it just puts them at risk. 

“It’s stressful to the families, and it also means that women will probably stay out of the workforce longer because you don’t feel safe to put your kid into childcare when they’ve been that sick.”