Cheerful Charlee the Heart Kids Poster Girl
When little Charlee Rogers was born at Timaru hospital in September 2012 her midwife noticed things weren’t right. Her colour was tinged blue and stayed that way when she started crying. When the paediatricians were called in to investigate they found her saturation levels were very low and her heart was not doing what it should be.
She was whisked away for further tests and her parents told that she needed to be transferred immediately to Christchurch. It was a scary time. “At this stage we hadn’t really been informed about what was wrong with Charlee. She was being tube feed and was hooked up to all kinds of machines in the neonatal unit. We found out later that evening the test results were sent to Auckland Hospital as Christchurch were unsure what they were dealing with.”
Two days later the diagnosis was given. Charlee had a hole in her heart. “Initially, we weren’t too concerned,” explains Cherie, Charlee’s mum. “We knew a lot of people with holes in their heart and they were all fine. We googled Ventricular Septal Defect and our hopes lifted.” But things were a lot more complicated.
“The doctors told us Charlee’s condition was more complicated than google could describe and we had to get up to Auckland hospital immediately.”
At just three days old Charlee was bundled into an incubator and onto the flying doctor plane to Starship. She was admitted to NICU (Neonatal intensive care unit) where she would spend the next three days having all sorts of tests done. She was hooked up to monitors 24/7. Her condition was certainly not straight forward. She was diagnosed with Atrioventricular septal defect, Unbalanced AV canal, double outlet right ventricle, Hypoplastic left ventricle, Tetralogy of Fallot (this is 4 defects) with dysplastic valve and very small main pulmonary arteries and multiple VSDs.
“As he was explaining and drawing pictures for us, and as the list of faults grew longer, our hearts broke even more. All I could think was, why us? Why our baby? What did we do wrong?
The doctors prepared us for the worst, and in hindsight, it was the best thing they could do.”
The family spent a month in Auckland, and while it was an intense and emotional time, they met so many amazing families facing similar issues and also members of the Heart Kids team. “To have that support was unbelievable. No one ever really understands what you’re going through except those who’ve walked in your shoes.”
Since her birth Charlee has had four major surgeries and hundreds of procedures. It’s been a roller coaster ride for Cherie and Shane, involving numerous trips to Auckland.
At one stage doctors told the couple that Charlee would be needing a heart transplant, but Cherie says no one really knows what the future hold. “The immediate future is looking OK. Charlee is at school, and while she gets tired at times, she’s in pretty good health. But as for the long-term prognosis, no one knows, not even the medical experts. It’s just a case of taking one day at a time.”