When Rory was born on 1st March 2012, we knew he had Coarctation of the Aorta and would be taken straight to the Brompton hospital for immediate heart surgery. But when the CATS team tried to pass an NG tube, it just coiled, and we discovered he also had a Trachea-Oesophageal Fistula (TOF) and atresia, which means his oesophagus wasn’t attached to his stomach but was connected to his trachea.

So just two days old, the Chelsea & Westminster gastric team were called to Bromton to repair Brompton to repair Rory’s oesophagus and trachea. At five days old, Rory was still ventilated and unconscious in PICU but his heart condition couldn’t wait any longer so he was taken back into surgery by the Brompton cardiac team to repair his aorta. We soon also learned that Rory had large ASD’s and VSD’s but he needed to be stronger to try and repair them.

After 4 weeks of struggling to breathe and getting smaller, Rory went into heart failure on April 3rd. He wasn’t strong enough to survive the bypass needed to fix the holes in his heart, but he couldn’t survive as he was. Again the Brompton cardiac team took him back into theatre, where Mr Uemura put a temporary band around his pulmonary artery.

When we were finally released from PICU, Rory was still dependent on CPAP as he couldn’t breathe on his own. He was then diagnosed with Trachea-Bronchomalacia and relied on breathing support for a year. We finally got home after 5 months in the Brompton, but we still needed the NG tube as he struggled with reflex when feeding and required overnight ventilation.