Rare heart condition causes Nhulunbuy couple to travel 4000km for specialist care

A rare heart condition means this remote Territory couple will have to travel over 4000km to access healthcare for their unborn baby. Read how their community is rallying behind them.

The community of Nhulunbuy have rallied behind a Territory couple who will have to travel more than 4000km to access care for their unborn baby.

Laurence Ranking and Phoenix Smith were excited to welcome their first child into the community they’ve made a home when a routine scan revealed a rare congenital heart condition called Transposition of the Great Arteries.

The condition means the critical arteries going in and out of the heart are switched, meaning the baby can’t get oxygen from breathing after they are born.

“Essentially the baby is safe while they’re in me because they get oxygen from me through the placenta, but the problem is when they’re born, because they won’t be able to get oxygen into the bloodstream,” Ms Smith said.

Laurence Ranking and Phoenix Smith, of Nhulunbuy, will have to travel 4000km to Melbourne to deliver their baby with a rare heart condition. Picture: GoFundMe.

Because of the condition, the couple have been visiting Melbourne and Darwin for specialist appointments and will have to travel to Melbourne where they can access specialist care for the birth of their newborn.

“They have to give special medication and procedures and then as soon as they can, which will be in the first week of life, they’ll do a proper open heart surgery,” she said.

The surgery, which will involve cutting off and reattaching major blood vessels and arteries, will mean the couple will have to relocate to Melbourne for about six months.

Ms Smith, who works as a local GP and medical educator, said it was “heartbreaking” to have to leave the community for an extended period of time.

“We would love to have our baby here and have a nice little normal life,” she said.

“It’s really heartbreaking to have to leave for this period.”

Despite the diagnosis, Ms Smith said she was overwhelmingly grateful for the healthcare system and the doctors, midwives and ultrasound team who picked up the condition early.

“I can only image if they hadn’t picked it up and we had a normal birth here and the baby would’ve gone blue and we wouldn’t have known why or what’s going on,” she said.

The community of Nhulunbuy have rallied behind the couple, with a GoFundMe being created to support the family during the surgery and recovery period.

It has raised more than $17,000 of its $35,000 target in just three days.

Ms Smith said it had been hard to accept the help from the community, but was extremely thankful for the outpouring of support.

“I love my colleagues, my patients, my community,” she said.

“We have a lot of love for this place and I think that’s probably helped us be able to swallow the bitter pill of humbly asking for help because that’s the nature of remote living.

“Reciprocity, passion and looking out for each other.”

She recognised the couples privilege in being able to access specialist services outside the community, acknowledging many Territorians in remote areas don’t have the same options.

“We hope by sharing our story there can be increased awareness and support for Territorians, particularly Aboriginal and Torres Strait Islanders living in remote communities with similar challenges,” she said.