Kisses For Charlie 3

After a roller coaster pregnancy, Charlie was born at CHCH women's hospital on 5th January 2015.

We were already staying at the Ronald McDonald House in CHCH awaiting Charlie's arrival. During the pregnancy it was known that Charlie had Down Syndrome and a congenital heart defect. Charlie was always so active throughout the pregnancy - we always knew he was ok and already a big part of our family. We remained in the NICU in Christchurch until Charlie was three weeks old. Then Charlie was transferred by NZ flying doctor service to Starship Hospital in Auckland. During those first few days at Starship Charlie had his first open heart surgery, it was a long eight hour wait for Charlie to come out of theatre. Five hours on bypass, but the team had managed to give Charlie a chance. They repaired most of the problems with Charlie's heart and he started to make progress, slowly but heading in the right direction. We knew it was going to be a long road to recovery, but this was okay because it meant Charlie would be with us, alive. I remained with Charlie at Starship whilst my husband, Scott and our other son Finn, returned to work and school in Oamaru. They juggled work and school and visiting as often as possible, allowing me to focus on being there with Charlie.

But at seven weeks old, Charlie started to deteriorate, his heart was failing again and a second open heart surgery was planned. Nothing prepares you for seeing your baby with his chest cut open attached to machines. But, the abnormal becomes the normal when you are part of this intensive care world. Charlie was strong and survived the unquantifiable risks that were given to us for this surgery, his heart started again no problem and we were euphoric. The relief was overwhelming. Initially Charlie seemed stable and recovering and my mother (grannie Annie) arrived from Scotland. As the days turned into weeks it was proving impossible to get Charlie off the life support that was sustaining his breathing and the mix of medications to support his body. The lungs were constantly being flooded because the heart could not function properly and there were no more surgical options. Charlie was just too young and his heart tissue was too weak for any further surgical repair to be successful. This news was devastating, Charlie was going to die and I just didn't see this coming. I truly believed he was a gift and that somehow he'd just survive the odds.

But at seven weeks old, Charlie started to deteriorate, his heart was failing again and a second open heart surgery was planned. Nothing prepares you for seeing your baby with his chest cut open attached to machines. But, the abnormal becomes the normal when you are part of this intensive care world. Charlie was strong and survived the unquantifiable risks that were given to us for this surgery, his heart started again no problem and we were euphoric. The relief was overwhelming. Initially Charlie seemed stable and recovering and my mother (grannie Annie) arrived from Scotland. As the days turned into weeks it was proving impossible to get Charlie off the life support that was sustaining his breathing and the mix of medications to support his body. The lungs were constantly being flooded because the heart could not function properly and there were no more surgical options. Charlie was just too young and his heart tissue was too weak for any further surgical repair to be successful. This news was devastating, Charlie was going to die and I just didn't see this coming. I truly believed he was a gift and that somehow he'd just survive the odds.

The anatomy of Charlie's heart was incompatible with any quality of life for him and he was struggling. At 10 weeks old on the 15th March 2015 Charlie chose his time, he made it clear it was time to go and he was taken off the life support. Charlie passed away in my arms, with his daddy, his big brother Finn, grannie Annie and 2 close friends all with him. It was the saddest moment of my life but Charlie was now at peace.

We had to get Charlie home, cargo in the hold of an aeroplane -no way! Charlie can't go in the hold of the plane while we sit up front. So, we hired a camper-van and had a wee road trip back to Oamaru. It was something we had talked to Charlie about doing one day whilst we sat with him in the hospital and so the decision was easy to make this our trip home.

Although Charlie's short life was spent in hospital, he managed to pack in a flight in an aeroplane, a trip in an ambulance, a ferry and a camper-van journey. He was on both the South and North Islands of New Zealand and he met so many people. He drew so many of these people to him, with his big knowing eyes and touched us all with his obvious personality. Everyone knew Charlie, and as a family we are just so pleased Charlie chose us.

Now we'd like to give back to all the wonderful people who have supported us on this journey. The support at Ronald McDonald House (North and South), Christchurch Neonatal Unit, Starship Paediatrics Intensive Care, Cardiology Team and Heart Kids NZ. We'd like to ensure funds are always available for families in need like we were. We'd like to honour and keep alive the memory of our wee brave heart Charlie. If we can do this by having an event each year in his name 'Kisses for Charlie' with your support and many others, then somehow we've all ensured Charlie's life does go on.