Story written 2019

Jack was born at 38 weeks with an unknown and undiagnosed neurological disorder. He was born via C Section and as soon as he was born he wasn’t breathing. The crash team were called and whisked him off to the special care baby unit (SCBU). He had no swallow and constantly aspirated into his lungs which made him very poorly. He would stop breathing all the time and require regular resuscitation. He was on and off the ventilators and needed a tube to breathe that went into his mouth and acted like a tracheostomy tube to help him breathe. At only 10 weeks old Jack suffered his first cardiac arrest and we were tragically told we had lost him. They were pronouncing time of death when all of a sudden they got the weakest of pulses.

They continued to work on Jack and he was transferred to Sheffield Children’s hospital intensive care unit where they did his tracheostomy at just 10 week old. He still has no swallow or gag reflex and aspirates often so he will have his tracheostomy for the rest of the short life he has. He has multiple severe complex medical needs and a life limiting condition. He requires 24-7 care from specialist nurses/carers and his parents. Jack has been in and out of hospital and on and off the ventilators his whole life and is a true fighter. Jack has had 3x cardiac arrests in his life and we have had to say our goodbyes to him many times, holding him in our arms. He is such a strong little boy who fights the big fight for life.

Jack is a very inspirational little boy and despite everything he goes through everyday he still loves life. He is a very special and inspirational young boy. He has repeated chest infections roughly every month and blocks his tracheostomy every day requiring emergency intervention due to how severe his secretions and lungs are. He requires a lot of specialist care to keep him alive. His lung is being crushed from his worsening scoliosis and he suffers from low oxygen levels and his heart rate dips overnight requiring emergency intervention. He has had many operations in his life and we have been told he is life limiting and his conditions will take his life. They can’t operate on his spine as they have said he is too poorly and wouldn’t survive the operation. He is known as the miracle child to have survived to the age he has.