Rory's Story

As told by his mum Isla

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 artresia, which means his oesophagus wasn’t attached to his stomach, but was connected to his trachea.
The Chelsea & Westminster gastric team came to the Brompton and operated on his 2nd day to repair his oesophagus and trachea. On his 5th day, Rory was still ventilated and unconscious in PICU but his heart condition couldn’t wait any longer and he was taken back into surgery by the Brompton cardiac team to repair his aorta. We soon also learned he had large ASD’s and VSD’s but he needed to be stronger to try and repair them.

After 4 weeks of struggling to breath and getting smaller and 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, and Mr Uemura put a temporary band around his pulmonary artery. We finally got out of PICU but Rory couldn’t get off CPAP and breathe on his own. He was diagnosed with Trachea-Bronchomalacia and ended up on breathing support for a year. We finally got home after 5 months in the Brompton, with the NG tube and Rory.Photo3overnight ventilation for home. All this made Rory dependent on the NG tube for feeding, and he struggled with constant reflux.

In January 2013 he was given a PEG and a Nissens Fundoplication – we finally saw his little face without the NG tube! He also still had the holes in his heart but was finally growing and getting stronger. He went back into cardiac surgery again in September 2013 to patch the large hole in his heart and it was a success.

Since then it has been onward and upward! He is still dependent on the PEG for all his feeds but we hope to start tube weaning soon. We were recently discharged from the respiratory team as he has grown out of the bronchomalacia, and the cardiac team seem pleased with his progress.

Rory has had 5 major surgeries, 10 GA procedures, and countless admissions and has all the scars to prove it. He is a happy, cheeky, active little boy who has many doctors, surgeons, nurses and specialists to thank for being here. So thank you, the Royal Brompton and everyone involved!!