Born at just 25 weeks, Dante has lung problems so severe he could be killed by just a cold or flu, let alone COVID-19, according to mum Erin Bice.

"He was on home oxygen for a year, which is probably one of the longest for micro-prems. If any cold or flu or a chest infection hits his lungs and goes to those little bronchial tracts, he won't get the right oxygen supply," she said.

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The disorder is caused by the mechanical ventilators used to keep very premature babies breathing.

In most cases it wears off after months or years - but doctors recommend regular check-ups every six months until it does.

By a stroke of luck, the family were able to get him assessed for the lung disorder in early 2020, when he was three-months old.

He was diagnosed with potentially fatal Bronchopulmonary dysplasia.

But, with the Delta coronavirus strain hitting the health system hard, the John Hunter Hospital Children's Sleep Clinic has been converted to a COVID-19 ward, along with most other clinics in the state.

Dante hasn't been able to see a specialist since then.

"We haven't had an assessment, so we haven't known what his condition is like since he was 3 months old," she said.

"We haven't had an assessment since March 2020, just as COVID hit. We literally snuck in. There were people going to emergency to get COVID tests as we're trying to sneak past them.

"We don't know what he's like, [what] his lung function is, so we don't know what treatment he needs."

Mrs Bice said they have had three appointments cancelled and were recently told their fourth, scheduled for November, is also unlikely.

She's among scores of parents left unable to get answers.

A Facebook callout this week netted 14 parents in a similar situation, she said.

One has two premature baby boys who haven't even had their first assessment, despite being six months old.

"They don't know if they need oxygen or certain medication," she said.

But after a week calling politicians, government departments and health institutions, her advocacy has garnered results.

Dante is going to part of a trial program that provides monitoring at home. He'll be among the first in the state, she said.

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"Dante is a perfect candidate. He's not a mild case of a lung disorder, but he's also not a very extreme case which would need doctor's supervision," she said.

"He was lucky enough to get tested in the clinic at John Hunter, so they've got a baseline to go off. They can test whether this mobile clinic will work. They've never done it before, it's new."

He will likely need to have his next assessment in Newcastle, but in future there is talk of a travelling assessment service if the trial is a success.

"I'm happy that my goal of getting my son assessed has worked," she said.

"I'm pleased that I'm literally first in line for my son to get tested. But it still doesn't solve it for everyone else."

Mrs Bice has formed her own help group for other parents in the same situation.

Hunter New England Health were contacted for comment on this story.

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