Little Harper Warsow is counting down the days to Christmas like any other five-year-old.
But unlike her peers, she is recovering from life-saving heart surgery and is just weeks away from major brain and spinal surgery that will leave her with a permanent disability.
Harper was born with congenitally corrected transposition of the great arteries – a complex malformation of the heart where the ventricles are on the opposite side of the heart from usual.
At four months old, Harper underwent 15-hour surgery to reverse her body’s blood flow, switch her arteries to the other side of her heart and fit her with a custom-made pacemaker to control her heart’s electrical current.
She spent more than two weeks in intensive care on life support and more than two months in hospital recovering.
Three weeks ago, her Tarneit parents Wendy and Brendon were forced to watch their youngest daughter fight for her life all over again. While playing with a friend, Harper snapped one of the four leads connecting the pacemaker to her heart, creating an irregular heart beat.
“Her heart was racing between 38 beats per minute to 165 beats per minute,” Mrs Warsow said.
“She had to be admitted to hospital to replace the pacemaker.”
While surgeons were doing that, they discovered that the chamber that returns blood from her lungs to her heart had narrowed. To fix the problem, they had to undo part of the surgery they had performed on Harper when she was four months old.
Mrs Warsow said her world had been turned upside down, and Harper’s siblings, Mason, 13, and Georgia, 7, found it difficult to see their little sister in such pain.
“What happened to her as a baby was the worst time of my life,” Mrs Warsow said.
“[This time] there was the fear that she wouldn’t make it because she could have had a heart attack.”
Harper will return to the operating table early next year for brain and spinal surgery for a separate medical condition, meaning she is likely to miss part of her first year at Westgrove Primary School.
Surgeons will fuse together the top two vertebrae in her spine, stopping them from squashing her spinal cords, and remove bone fragments from her brain stem.
The surgery will leave Harper unable to move her head from side to side.
“She needs the surgery. We have been told that one hard knock and she will be paralysed,” Mrs Warsow said.
“She can’t jump on the trampoline or do normal things other kids can do. After the surgery, she will be in a wheelchair and body brace and will miss a lot of school. And she will always have an ongoing heart condition.”
Family friend Keona Willemen is trying to raise $10,000 by the end of December to help the Warsows pay for Harper’s medication, rehabilitation and wheelchair.
» peoplepledge.com.au/2013/harper-warsow
