Melanie McLoughlin’s son Cooper, now 10, has had a catheter procedure and an open-heart surgery stemming from aortic stenosis, a blockage of the aortic valve.

She said the ordeal had caused a great deal of stress and cost thousands, and hopes the national plan will help families like hers.

Previously: ​Cooper’s battle for a healthy heartbeat

The government committed last week to delivering a Conquering Childhood Heart Disease National Action Plan by October.

It will be jointly developed with national charity HeartKids, and address models of care, mental health, financial impact and more.

Mrs McLoughlin said finding suitable accommodation was “incredibly hard”, as was follow-up care and the lasting emotional impact.

Cooper had open-heart surgery last year at Westmead Children’s Hospital last year for a valve replacement.

Two of his brothers stayed with Mr McLoughlin’s parents.

His mum, dad Matt and infant brother Hudson stayed within the hospital. 

“We used it because we could be close so we could tag-team: one of us would stay with him while the other one would get some sleep. Matt and I never left his side,” she said.

Cooper had complications during the surgery, which ended up lasting 10 hours with two stretches on bypass, a big bleed, defibrillation and his chest being left open for 24 hours while he was sedated and on a breathing tube.

This limited the suitable accommodation options after his discharge, when the McLoughlins had to stay close to attend a post-op check a week later, but weren’t eligible to stay in the hospital.

“Most places were little cottages the hospital had contact with, but they were a bedroom in a house with maybe four other families and shared facilities … after what he’d been through, we needed him to recover in comfort somewhere quiet.”

Ronald McDonald House was “hard to qualify for” and could only give a day or two’s notice about whether or not a room would be available.

So they found a Parramatta apartment on AirBNB.

“It ended up costing us about $2500 for the accommodation, then obviously we bought our groceries and tried to cook homecooked meals,” she said.

The Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) covers just $20 a night for this type of stay.

Mrs McLoughlin said the family’s location had very much influenced Cooper’s treatment.

“It was a choice between a mechanical valve or this Ross procedure – a bigger surgery,” she said.

“With a mechanical valve, he would have had to be on blood thinners.

“We didn’t feel safe being in such a rural area and with a rural lifestyle if he happened to fall off his motorbike and have a bleed – that was a risk we weren’t willing to take.”

Also, after being home for just a week, Cooper had an infection and had to be transferred to Tamworth hospital, where he was under the remote care of Westmead specialists.

“He couldn’t have an echocardiogram done, because there’s nobody around here who can do them on children.”

Mrs McLoughlin has welcomed the national plan’s attention to the mental health of patients and families, saying the aftermath was, in a way, harder than the surgery.

“There, we coped relatively well – because you had to,” she said.

“It’s afterwards when we got home and had to settle back into reality that it hits you …

“You come home, that’s it, life goes on and I think that’s what was hard to deal with.

“I couldn’t look at photos for a very long time – up until a month ago actually.

“It was too raw to face what happened.”

She would like to see more government assistance, too.

“Child heart disease is not considered a disability, therefore applying for help such as Health Care Card or Carers Payment is not easy,” she said.

“We managed to apply for a Health Care Card and got approved once to help with his doctors’ appointments and medication, but have had to reapply with no answer yet. 

“Heart kids are not eligible for any assistance, even during Cooper’s time off school, [and] the NDIS is of no assistance to heart kids alone: they have to prove intellectual and physical disabilities.”

She said Cooper was doing well academically and socially, but his stamina was “not really good”.

He still needs to have a sleep study, a Holter monitor fitting and an exercise test – which looks like another three trips to Sydney – and all before his next check-up at Westmead in June.

“We still live our lives, six months at a time waiting for that next appointment.”