A "broken" couple has endured the unthinkable, being forced to say goodbye to their toddler daughter after a rare and "quite complex" condition claimed her life after 18 short months. It’s the second heartbreaking tragedy Leon and Danielle Green from Western Australia have been dealt. Just two years ago, they lost their first child Sunny for the exact same reason — sadly, he was just nine months old.
Leon admits they knew very little then about the rare gene mutation, PPA2, that claimed the lives of both their children. But armed with more knowledge after Sunny's death, they thought things with Airlie would be different.
It was only after Airlie suffered from ventricular fibrillation (VF) — a life-threatening heart rhythm that results in a rapid, inadequate heartbeat — at five months old that a geneticist unravelled the unsettling truth, and the couple was finally able to "get closure" for Sunny after a year-long battle for answers.
"Luckily, my wife was holding Airlie at the time, and she was able to be saved," Leon told Yahoo News Australia, less than three weeks after her death. "We subsequently spent the next six weeks in Perth Children's Hospital, two of which were in ICU, and the doctors just couldn't figure out what was wrong."
"Through the process, we got our genetics tested and the diagnosis wasn’t great," the 40-year-old continued. It was at that point their daughter Airlie was diagnosed PPA-2, with the geneticist confirming their son had the same mutation.
Rare gene mutation causes sudden cardiac arrest
The PPA-2 gene mutation predominately affects the heart with individuals often experiencing sudden cardiac arrest, triggered by viral infections or alcohol. The situation with Airlie became "quite complex" Leon said, admitting she had "a very strict medical emergency plan" for whenever she got sick.
"She was a happy, healthy girl until she got sick, and she got through multiple viruses. We were very positive about how her journey was going," the father revealed.
"We started a support group online and found bunches of other families across the world going through a similar crisis. The group was growing. We just dedicated our life to getting answers and how to best manage her when she was unwell."
'Traumatic' turn of events after hospital visit
However, things took a turn for worse when the little one was rushed to the hospital after "vomiting a couple of times" earlier this month. Gastro is what triggered her first cardiac episode, so a visit to the emergency was essential. She was sent home 24 hours later after being given the all-clear.
But two days later, on May 12, which was also Leon's birthday, the couple rushed her back when the 18-month-old continued to vomit, sparking concern.
"That's when everything just went downhill," Leon recalled. "It was an extremely traumatic day and unfortunately we lost her."
"She went into a metabolic crisis, which then dropped her blood pressure, raised her heart rate, and unfortunately, they just couldn't stabilise her," he explained. "She ended up going into cardiac arrest. We were given a really difficult decision of whether to continue with the resuscitation or to let her die."
Couple 'broken' after losing two children the same way
The couple, who live in Baldivis, about 46 kilometres south of Perth, have been unable to return to work in "fear of facing everyone" — Danielle at Rio Tinto and Leon who held a management role for an offshore oil and gas engineering company. And any future family plans they had are now on hold.
"We're broken," Leon said in the midst of planning a funeral for another child. "We're going through all of the real rough stuff that we have to do. It's super taxing, emotionally," he said.
Friends of the couple have launched a GoFundMe page in a bid to provide them with "time off work to heal," with any extra funds being donated to the Starlight and the Heart Kids foundations.
Plans for family crushed by double tragedy
It was a "very long drawn out process" to get answers to what caused Sunny’s death. Danielle fell pregnant again with Airlie "not knowing any of the risk factors". Leon admitted that had they known, they would have considered IVF instead — which can detect the gene early. Now they fear it's too late to start again.
"We want a family, all we've ever wanted is to have kids. But we're talso, scared about going down that path again to face something like this again for the third time," the father said.
"One thing is for sure, we still want to educate people about these types of disorders and take this situation that we've been through and potentially help the next family that has to face that."
The couple is calling for standardised genetic testing for expectant parents which could help detect "gene code errors" at an earlier stage which could prevent other families from suffering in the same way they have.
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