Hunter Graham: HeartKids helps Manly baby with health challenges

The family of a brave hearted baby from the northern beaches has praised the support it received from a charity for her health challenges.

Hunter Graham, an 11-month-old girl from Manly, was born with Childhood-onset Heart Disease (CoHD). She and her family received support for Australian charity, HeartKids.

In April last year a beautiful baby was born in Northern Beaches Hospital.

But for Hunter Graham, and her parents Georgia and Nathan, it was the start of what would be a series of health challenges for the girl from Manly.

Hunter was born with Childhood onset Heart Disease (CoHD), with two holes in the chambers of her tiny heart.

The congenital abnormality was linked to a diagnosis of Alfi’s Syndrome, an extremely rare chromosomal disorder in which some DNA is missing or has been deleted. It can lead to heart problems as well as ongoing developmental issues for children.

With the concerning news for Georgia and Nathan that their first baby would have to undergo open heart surgery, at just four months old, came uncertainty and anxiety.

Hunter Graham had open heart surgery to repair two holes in her heart when she was four months old.

But the new parents were able to turn to a charity, HeartKids, which offered them emotional and concrete support before and after Hunter had her operation.

They didn’t have to take the journey alone.

Each year, between 2400 and 3000 Australian babies are born with a form of congenital heart disease – the most common congenital disorder in newborns that affects up to 1 in 100 births.

Georgia Graham with her daughter Hunter.

HeartKids says it’s the only Australian charity dedicated to providing lifelong support, resources and advocacy for the 250,000 people impacted by CoHD.

Its representatives, who have gone through similar experiences with their children, provided answers to questions from the Grahams and provided emotional backup in a time the family needed it most.

Georgia said their journey started when they were told, soon after Hunter’s birth, that she had Alfi’s Syndrome.

Mum and baby were transferred to the Royal Hospital for Women at Randwick.

“Pretty much every specialist came and visited us while we were there,’’ she said.

“From them, that’s how we found out about her CoHD.

Hunter, with mum and dad Nathan and Georgia Graham.

“We had zero indication before that. We just had a normal, healthy pregnancy and then it was all revealed when Hunter was born.”

Doctors originally told the parents that surgery to correct the heart defect may not have to be performed until Hunter was bigger and older, perhaps three or four years old, and that the condition could be managed with medication.

But because Hunter was working so hard to move the blood around her body, because of the holes in the chambers, she was having difficulty gaining weight.

“She was just getting skinnier,” Georgia said.

“It got to point where the cardiologist said ‘this isn’t working’ and we need to get the surgery done.

“She ended up having the surgery at four months old.”

Hunter has just had the one operation. The holes are fixed, but she still has regular visits to her cardiologist.

But Georgia said Hunter was still facing more surgeries and ongoing therapy for issues associated with Alfi’s Syndrome including an operation to separate the prematurely fused plates in her skull.

She’s already had surgery for a hernia, another common consequence of the syndrome.

Hunter Graham will have ongoing surgeries and therapy to help with the consequences of Alfi’s Syndrome.

Hunter will undergo ongoing physiotherapy to improve her muscle tone as she grows as well as well occupational therapy and speech pathology.

“There will be weekly appointments, long term through her childhood,” Georgia said.

“But all things considered, and all the appointments she’s had, she’s always been a happy baby.’’

Georgia and Nathan met their HeartKids representatives, Kath and Joanne, at the Royal Women’s cardiology ward and at The Children’s Hospital Westmead.

The women both had children with serious heart issues.

“They were a great shoulder to lean on,” Georgia said.

“Just having people there who’ve been through this themselves, was a great support.

“The empathy they have and the way they can give us an idea about what’s going to happen and tell you what to expect, is great.

They kept in touch after the operation, always checking in to see how Hunter’s going, months after the surgery.

“They showed genuine concern. “They were so lovely.”

Georgia urged people on the northern beaches to check out HeartKids and support its work.

“They do deserve so much support. They really go above and beyond.

“There are so many HeartKids initiatives and events that people can help with,” she said.

For information on HeartKids and to see how you can help, click here.