Mikey Lovf is four months old. He has just a few weeks left to live.
When Mikey’s mum Melissa Lovf went to her 12-week pregnancy scan late last year, she was told her unborn baby had a heart problem – a single ventricle cardiac issue.
“We were offered the option of termination,” the Melbourne mum remembers, “but were also told that with approximately three open-heart surgeries – one at a couple of days old, another at three months and another at three-years-old – Mikey had a good chance at having a good, happy quality of life.”
Mikey arrived “looking like a perfectly happy healthy little boy”. But an MRI revealed terrible news. On top of what he had, he was diagnosed with total anomalous pulmonary venous drainage.
“This meant he was having his first open-heart surgery within 36 hours of birth,” Lovf says. “We got to hold him the morning of his surgery and were told he only had 50/50 odds of survival.”
Happily, the surgery was a success. So was a second operation to put in a shunt.
“Our lion man was such a fighter and we were so proud of him.”
Lovf took Mikey home.
"For 18 wonderful days we played happy families and thought we were on track to give our boy a good life. No tubes, no assistance, just a five-week-old baby."
But when Mikey began struggling to keep his feeds down, a scan showed that his veins had narrowed. This was the worst possible news. A surgeon offered to carry out an operation that had only a minimal chance of success, and Lovf agreed. But the results came back, showing the operation had been unsuccessful.
"There was nothing else that could be done for Mikey, except to make him comfortable. The guide they gave is a few months at most.
"The news broke us. Our little boy Mikey, who was so full of life and just starting to show his personality, was out of options."
Lovf gave up on her plan to go back to work. She chose to bring Mikey home from hospital, and spend the remaining weeks of his life creating memories.
Friends wanted to do something to help, and at their urging, Lovf's sister Nicky O'Keefe set up a gofundme page.
"She's just trying to do things like go the zoo, maybe have a pretend Christmas, his birthday, things like that," O'Keefe told Mamamia. "She just wants to squash all those things into his life.
"At least we've got this time."
Lovf is hoping to make more people aware of congenital heart disease (CHD), which is the largest single cause of death of Australian children under the age of one. Four babies' lives are lost to CHD each week.
"Perhaps if more was understood about CHD, more funding would occur and there would be more options... but there isn't," she says. "All we can do now is make memories, whilst we can."
She would also like people to understand how important it is to be an organ donor.
"In Australia we have an opt-in system. It doesn't work well enough and many donor opportunities are lost."
Lovf says when Mikey was diagnosed, she had no idea of what a traumatic world of heart disease she was about to be thrown into. She says Heartkids gives "continuous support" to families.
"I do not regret having Mikey, as whilst he had a chance at a good-quality life, we fought for it.
"However, the things we have seen in this community are just overwhelming - so many children fighting hard and amazing surgeons operating against the odds. Also, so many children waiting for transplants. Some get them, and when you hear the laughter of a child that is post-transplant on the ward, it makes those hard days worth it."
To donate to Mikey's gofundme page click below.