Before Cooper was born we were told he had something wrong with his heart. Cooper was born by emergency C-section and taken straight to NICU at St. Mary's Hospital, Manchester. A week later we had a full diagnosis and Cooper was put on dinoprostone to keep his ducts open until open heart surgery.
We were transferred to Alder Hey when Cooper was 3 weeks old. Unfortunately Cooper wasn't at the weight needed to have his surgery and it took until he was 5 weeks old when he had pulmonary artery reconstruction and a 3.5mm right modified BT shunt. Cooper did really well and was home for the first time 1 week later. He was on a lot of medication and twice weekly visits from the community cardiac nurses and also 4-6 week visits to see his cardiologist for ECG, Echo, height and weight.
Cooper underwent another open heart surgery to reconstruct his left pulmonary artery and to upsize his BT shunt to 4mm. We managed to get home 2 weeks later and his after care remained the same. There was a period of time where his saturations were extremely low and he was becoming very breathless. He was having more blue spells and cyanosis. This was all checked on his visits to Alder Hey and it was decided he needed intervention.
In 2020 Cooper had to go into hospital for an intervention which was a cardiac catheterisation with balloon dilation of the left pulmonary artery.
Cooper was still breathless but able to manage a little better for a few months.
Summer 2020 Cooper had a central shunt from his ascending aorta to left pulmonary artery, he recovered really well in ICU and was transferred to the cardiac ward where unfortunately his saturations were dropping dramatically. In July 2020 the cardiologist decided Cooper needed another surgery and he was in hospital for 7 weeks. We were told to go home to make memories but still continued his visits from the cardiac nurses. Four weeks later we had to go back to see his cardiologist, all went OK and the staff were really surprised to see us. When his nana asked why one of the nurses told us he wasn't expected to live. Cooper being Cooper wasn't giving up and we cherished every moment
By Summer 2021 Cooper was showing more sights of blueness and struggling with his oxygen levels and it was decided he would need his 4th open heart surgery. They took out all of his stents and BT shunts and replaced them with a conduit. Cooper's saturations improved but he was struggling with swallowing. A videofluoroscopy showed an unsafe swallow and he had to have thickened fluids. In November his cardiologist was so impressed we were told to go home and enjoy Christmas and that it would be a few years until he needed more intervention.
In Summer 2022 we noticed Cooper had breathing problems and more blue spells, he was also having vacant episodes. His cardiologist has referred him to a neurologist and we should expect more heart surgery. Since surgery Cooper has improved dramatically and he's able to move around more without having to rest every couple of minutes. We have been told Cooper will need more surgery but they can't predict when.