Heart mum Gillian Bax shares her special story about her heart child Lacey:
Three-year-old Lacey Downes is one of those children you never, ever turn your back on.
“She is probably the most challenging child I have ever met in my life,” says her mum, Gillian. “She’s fiercely independent and very, very strong willed.”
Whether she’s scaling the shelves in the pantry, dressing as a princess or covering herself in mud – “looking like she’s been dragged through a hedge backwards” – life is never dull with Lacey around, Gillian says.
Lacey has kept the Downes family on their toes ever since she was tiny. Born on new year’s eve 2018, Lacey’s arrival into the world was uneventful, Gillian says. The newborn baby fed and slept with ease, and the family of four quickly settled into their new routine.
But that changed less than three weeks after Lacey’s birth, when a midwife made a routine check up.
“The first thing she said was: ‘Does Lacey look slightly blue to you?’” Gillian remembers.
Lacey was immediately whisked away to the local emergency department, and then sent by helicopter to Waikato NICO and then to Auckland’s Starship Hospital.
With Lacey’s condition deteriorating by the hour, a medical team was waiting in Auckland, ready to operate on the tiny baby that Gillian and her husband Jordan learned had Total Anomalous Pulmonary Venous Drainage.
The events felt surreal, Gillian says.
“I vividly remember our surgeon telling us that Lacey had a congenital heart defect and required emergency surgery and that, as we were speaking, that’s what they were prepping her for. I said some pretty choice words and begged the surgeon not to let our baby die.”
Less than 24 hours after the midwife’s visit, Lacey had life-saving surgery. It was a tough day, but there was more to come, with the small baby developing chylothorax and pneumothorax, and eventually undergoing another open-heart surgery.
But after seven weeks, Lacey was discharged, and the family hasn’t looked back, Gillian says.
“Luckily for us, it’s been extremely uneventful since we left Starship.”
While the 3-year-old still has biannual checks with a cardiologist and annual checks with a paediatrician, she’s healthy and happy, Gillian says.
Lacey has an official diagnosis of cerebral palsy; caused by damage to some of the white matter in her brain which occurred at some stage in her heart journey. However, aside from walking later, and being a little clumsy, this hasn’t stopped Lacey, who simply picks herself up after she falls and gets on with it, Gillian says.
Through Lacey’s heart journey, the Downes were grateful for the “amazing” work of Heart Kids, Gillian says.
“I can’t speak highly enough, all of the support we had, especially in the early days when you want to speak about your experience a lot.”
The family went to coffee meet ups and Hamilton events, and connected with a support worker who would ring for “big chats”, Gillian says. The relationship with heart Kids was an unexpected positive in a dark time, she says.
“This was not a club we wanted to be a part of but we are so grateful that we are.”