Written by Heart Angel Mum Carla “Our baby Connor was born on the 7th September 2016. At the 20 week scan doctors picked up on the size of Connor’s aorta. They were airing on the side of caution but suggested it could be coarctation of the aorta (something I had never heard of). However, we were advised that it would be difficult to diagnose antenatally. Shortly after Connor was born, he was admitted into NICU for observation. He was a good weight of 3.5kg with chubby cheeks a gorgeous smile and two dimples. After performing an EKG they found Connor had: Hypoplastic aortic arch, PDA, ASD and pulmonary vein obstruction. At 5 days old Connor underwent major open heart surgery. The operation was successful and he was meeting all milestones. We were elated and the nightmare rollercoaster seemed to be slowing down. Throughout Connor’s treatment we were always scared about the pulmonary veins as we knew this was a very rare and serious condition which had a tendency to reoccur. The statistics scared us but we hoped everything would be ok.
After de-intensifying treatment at PICU, close obs and finally cardiac ward, we were able to take our gorgeous, little man home. I was worried about reflux, sweating during feeds and other symptoms. It was stressful managing the NG feeds at home but we did our best to follow the hospital guidelines. About a month after returning home we ended up back in the hospital. The second visit was so much harder. Our little fighter had difficulty breathing due to the fluid build up on his lunges. An MRI showed the pulmonary vein stints had reopened from the initial surgery and he was going into heart failure. Our little fighter passed away peacefully on the 4th November 2016 with mum and dad holding him. We will never forget all the doctors, nurses, and social workers at LCCH/Mater. In addition Heart Kids QLD who were always there for support and a shoulder to cry on.”