By Shannon Chamberlain
“A gentle heart is tied with an easy thread.”— George Herbert, British poet
Every day in Australia, eight babies are born with heart defects.
And to make matters worse, Adelaide stopped offering major Childhood Heart Disease surgery in the early 2000s.
HeartKids SA/NT director, Maryanne Noone says, on average, two to three families every week have to travel from the Flinders Medical Centre and the Women’s and Children’s Hospital to Melbourne for life-saving heart surgery.
Maryanne says, “From the outset, families experience greater inequalities in managing their child’s heart disease than other Australians”.
“In some instances, depending on the severity of the case, the family can be given just a few hours notice.
“Relocation to Melbourne can be anywhere from a two-week period up to many months at a time.”
This is what happened to 28-year-old Jennifer Mundy and 27-year-old Mel Giardina, who both dropped everything to fly to the Royal Children’s Hospital.
Jennifer was a dental assistant working in Brighton before she gave birth and is set to returning to work next month.
Jennifer gave birth to her beautiful daughter Lara in the Women’s and Children’s Hospital on 30 October last year.
“My pregnancy went all fine and my labour was relatively easy and I did it naturally with no drugs or anything,” Jennifer says.
It was weeks after Lara was born that Jennifer and her 29-year-old partner Michael Dart learned Lara was a HeartKid.
“We didn’t actually find out until she was about three weeks old and we took her to the GP because she got oral flush,” Jennifer says.
“They noticed a bit of a heart murmur so they sent us to go and see a specialist.
“She had the coarctation of the aorta, which is basically that the area of the aorta that goes down to feed her lower organs and legs has a narrow section and therefore the blood couldn’t flow properly.
“I was devastated, I was speechless, my partner pretty much had to take over everything because I was just a blubbering mess.”
Jennifer and Lara flew over with the Royal Flying Doctor Service and Michael took a normal flight to the Royal Children’s Hospital in Melbourne for the surgery, which took place around a month after she was born.
They were offered a room at the Ronald McDonald House but decided against it: choosing to stay at the hotel inside the hospital instead.
“The biggest thing for me was to be as close as I could be to my little baby”.
The successful procedure lasted about five hours.
“When she came out of the surgery she was in the intensive care unit for about three days.
“They just observed and they took her off of the medications… and made sure everything was working okay.”
Lara is now a happy, healthy seven-month-old baby. Jennifer says, “The issue with the aorta has been fixed but she will have to be monitored for the rest of her life to make sure as she gets older that she doesn’t need secondary surgery or anything… she’s able to live a completely normal life.”
Jennifer was happy with the amount of support she received during this time and that she didn’t mind having to travel to Melbourne for specialist care.
“HeartKids were amazing,” she says.
“They provided us with food vouchers, they helped organise all of our flights and accommodation, they gave us taxi vouchers so that we didn’t have to worry about paying for our trips to the airport and back… they gave like a backpack that had just like little supplies that you might need.
“It would be nice if the equipment was here but I was happy to go wherever we needed to help my little girl.”
Mel Giardina’s beautiful girl was also born with a heart defect.
Her three-year-old daughter, Mia was born a HeartKid on 26 November 2014 at the Women’s and Children’s Hospital.
Mel says, “When I gave birth to Mia she came out a bit blue so they took her into the Emergency Care Unit for a short amount of time then brought her back to me a couple of hours later.”
“I didn’t think very much of it at the time.”
It was two days later when Mel began to realise that something was wrong with her baby.
“I had been craving Red Bull but I was not really wanting to affect the pregnancy so I never took it.
“…I didn’t read on the back of the can when I took my first swig out of it because I was breastfeeding Mia at the time.
“All of a sudden, she just screamed out of nowhere and it was just a horrible cry and I will never be able to forget it.
“I was literally freaking out because I read the back of the can straight after and I thought maybe the Red Bull was racing her heart so I thought it was my fault.
“So, the nurses came and they checked her and overall she was fine.
“They put a stethoscope to her heart and found a slight murmur which was the reason for the cry,” she says.
It was a week or two later that multiple x-rays, blood tests and a MRI revealed Mia had multiple heart defects.
Mel says, “She ended up being diagnosed with Ventricular Septal Defect (VSD), Atrial Septal Defect (ASD) and Pulmonary Valve Stenosis (PVS).”
Despite originally showing signs of being cheerful and well, Mia progressively got worse while she waited three months for her surgery.
“She was on breastfeeding every hour and then the gastric tube every three hours for formula to try and make her gain weight so she could go into surgery.
“In that process, she caught pneumonia and she also caught Rhino virus.
“It’s like a common cold but for babies because they don’t breathe very well and they can’t move their necks so she actually had a lot of breathing difficulties.”
Mia also caught gastro while she was waiting for surgery, so the date was urgently brought forward.
“I lost a lot of friends because I wasn’t able to have anybody over because I was so paranoid about her just dying on me because if she caught any common cold she wouldn’t be able to fight it,” Mel says.
Baby Lara was registered as a HeartKid and sent storybooks and information for social events.
Mel also received help from the Ronald McDonald House, which provided her with free accommodation and the Royal Flying Doctor Service who paid for her flights.
“Melbourne did a really good job… they put up accommodation, they paid for the flights, they made me feel welcome, it was a really good environment,” Mel says.
Jennifer and Mel say no HeartKid mum will ever need to travel the long and difficult journey alone.
Image source: Child Safety Network