Imagine having to watch your three-month-old baby go into lifesaving surgery. Now imagine that happening five times within one week.
That’s exactly what Melbourne parents Krystal and Steve Novak were faced with, when their baby girl Bonnie was diagnosed with a serious heart defect.
“It was the most difficult week of our lives,” Krystal tells Be exclusively.
“I will never forget the first moment I handed her to the anaesthetist, and watched her smile turn to tears.”
Bonnie’s heart condition was actually discovered by complete accident, after her parents noticed her pupils were different sizes. Initially doctors thought the difference was a result of a condition called Horner's Syndrome.
But when Bonnie was sent for a chest x-ray to confirm in August last year, her parents were given the devastating diagnosis.
“I'll never forget his words: ‘we didn't find a tumour but we did find something we weren't expecting. Bonnie has an enlarged heart’,” Krystal remembers.
“We needed to make our way into the hospital that night.”
And Echo and ECG scan were done and doctors confirmed Bonnie had AVSD (Atrioventricular Septal Defect) and a leaky left (mitral) valve, but were confident they could fix the problems with surgery.
“We'd only known about her condition for a week when she went in for her first surgery,” Krystal tells us.
“Not that we knew it then, but she'd have five operations over the course of that week that really tested our ability to endure.”
But Krystal says it was Bonnie’s first surgery – an open-heart surgery to repair the holes and attempt to repair the leaky valve – that was the hardest, as it went for nearly 12 hours.
“We handed over what had seemed to be a perfectly happy healthy baby,” she says.
“I was oddly at peace until around 7pm when we hadn’t heard anything. The rest of that evening went from bad to worse, we were a mess.”
While doctors were able to repair the AVSD without any problems, the leaky valve was causing issues. To avoid putting her heart under too much pressure for one day, they had to stop the surgery.
The next day Bonnie went in for a chest clean, followed by another open-heart surgery on the following day to replace the leaky valve with a mechanical one. A day later she had another chest clean, and with only one day to rest, she had a pacemaker inserted on the sixth day.
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“We spent around two weeks in ICU,” Krystal explains.
“It was hard to watch, but we learned that we had to enjoy, taking joy in the little things like being able to wipe her down, pat her head and sing to her.”
Since then Bonnie’s condition has improved significantly and she is meeting all her milestones. While she requires a daily dose of Warfarin to thin her blood, and weekly heel prick blood tests, Krystal says she is taking everything “like a champ”.
“Bonnie is wonderful, hilarious and extremely expressive,” she says.
“She's very brave and has gone through more in her first three months of life than most people in their entire lives.”
While she still needs to be monitored, Bonnie’s surgeons are confident science will continue to move in leaps and bounds in the area of the heart and things will only get better in the future.
“If I'm really honest, I'd like all of this to be over for good but since that isn't an option, I'll settle for a well-adjusted, happy, kind and otherwise healthy baby, toddler, child, teen and adult.”
Krystal, Steve and Bonnie have enjoyed support from HeartKids during the course of their journey so far. February 14 is Sweetheart Day. More info here.
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