Liam was born in 2004. As soon as he was born we knew something was wrong with him. He couldn't open his eyes and they looked very sunken. He failed hearing tests and didn't cry. At 3 weeks old and after numerous tests he was put under his 1st general anaesthetic and they found he had no eyeballs. His eyelids were also fused together. This started our numerous, often weekly visits to Moorfields hospital in London, to try and construct eye sockets to enable him to have false eyes. We were told that without eyes his mid range of his face would not grow and there was a chance it could collapse and affect his airways. He underwent numerous operations, in excess of 20+. This involved shaving out the inside of his bottom lip to line the eye sockets. Balloons were inserted to try and stretch the area. Everything that was put in the socket was rejected.
He was not meeting his milestones and as time went on the medical picture just got worse. At 2 years old he had his 1st seizure and ended up in resus as he went into respiratory arrest. At the age of 5 his seizures were really bad and his future did not look great. We decided to stop all the constructive work on his eyes as this became less important.
We have since decided on no future interventions medically unless it is for quality of life. He has been poked and prodded for his whole life which isn't fair on him. He attends a special needs post 16 unit. He has had a lot of challenges in his life and continues to do so, but he is the most fun, loving and very rewarding young man and we are very proud of him.