About - Jack K

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.

Update 24th November 2025

We just want to update you all on Jack as we’ve had some significant news which has hit us hard again. He had his ENT appointment in Sheffield and was scoped to see how his airway is doing. Unfortunately, the granulation growth in his windpipe has doubled in size and he has a sliver of airway left. It has now also grown skin over, so steroid drops won’t work, and he will need to be operated on asap.

The consultant has said that due to the trachy causing so much trauma to his airway, as he has significant scoliosis and how Jack moves around, there will be a catastrophic event any day now. He said he is unfortunately at the end of the road with his tracheostomy that’s kept him alive for 20 years, and it will have to be removed and replaced with a laryngectomy. This means they stitch the top of the windpipe off, remove his voice box, and leave a hole in his neck which leads directly to his lungs.

This is really hard to process as Jack has always had the safety net of us being able to change his trachy when he blocked off, but that will no longer be an option. Jack has his tracheostomy due to not having a swallow and his severe secretions and blocking off. With having an inner tube in his trachy, it is much easier to deal with emergencies as he could still breathe through his nose and mouth for short periods of time. With the laryngectomy, he will no longer have that secondary safety of an inner tube.

Due to the curvature of his spine, the trachy is causing this significant damage, which is why a trachy is no longer viable. We are all very upset and trying to process this information.

Update April 2025

Just wanted to update you. Jack’s scoliosis has significantly progressed and has now bent his airway sideways, causing his tracheostomy to create trauma and scar tissue to his windpipe, which is gradually closing his airway. They can’t operate, as they said he wouldn’t survive, and there is no suitable alternative tracheostomy for Jack’s condition. They can’t even custom-make one. His back and windpipe are continuing to curve, so eventually his trachy will pierce through the windpipe.

It’s heartbreaking. He’s in a lot of pain and we don’t know how much longer we have him. We always knew the day would come, and we are lucky he has got to 19, but now it feels much closer. It’s very hard to explain. We feel lost and so heartbroken. We don’t even know if this could all happen by Christmas or will take years. His conditions are worsening, and when his airway is blocking — which happens daily anyway due to no swallow, thickened secretions, and his airway — it’s taking longer to free it up because of the curvature and the severity of the secretions. His airway is now 70% occluded.

Update 16th May 2022 

The last couple of years have been tough with the covid pandemic and lockdown, as it has been for many but having a child with multiple severe complex medical needs on 24-7 palliative care really does make it a whole lot more scary. Last year Jack had an operation to have a jejenostomy tube properly fitted as his stomach doesn’t work properly. In March this year when they were confident the channel to his jejenostomy was well established they sniped the tube and replaced it with a button. 

Jack still continues to get multiple chest infections and coughing up blood which results in more medical interventions to get on top of it as his airway blocks regularly. Jack has worsening scoliosis (curved spine) and as his spine continues to curve his pain increases. It’s starting to crush his lungs. His spinal consultant has said that he doesn’t think Jack would survive the operation to try to straighten his spine so it’s just a case of trying to make him as comfortable as possible now on 24-7 palliative and life limiting care. This is delivered between night nurses and us, his parents. Jack is on pain management which has resulted in him on multiple pain medications to try to ease his discomfort. Sensory sessions like massage, and sensory play can also help depending on the level of pain at the time. Jack loves being pampered and enjoys foot spas, massages to hands, feet and legs and lots of cuddles. He also love it in jacuzzis and even has one in his bath at home. 

We are going through lots of problems with home care as it’s a nationwide struggle to find carers. At the moment he has NHS nurses that come every night to help us so that we can get some rest but even they have to wake us to help when he is poorly and the shifts are sporadic meaning we pick up the shifts with no sleep. Jack is having to be home educated due to no day carers and your gifts have really helped with this so thank you so much. 

We have a new addition to the family! In December we had a baby boy called Thomas and he is absolutely beautiful. Jack loves his new baby brother. Baby Thomas’s entrance to the world was scary as we had all caught covid and were all very poorly. Mum went into early labour due to covid. It was all very scary but luckily both survived. Jack was bad during covid but luckily stayed out of hospital due to his high level of care between us and his night nurses. 

Over the past year Jack has been having a lot of problems with his breathing overnight. We made his respiratory consultant aware as it seemed his airway may have been collapsing whilst asleep. They got a ventilator nurse involved and he had a sleep study at home. His co2 levels were the high level of normal and they did debate whether to increase his pressures on his overnight humidifier to try to force air into his lungs to open the airway more, acting like a ventilator effect. This is still in the process and he is being monitored closely whilst it is sorted. 

Jack got to the point where he stopped sleeping and it was making him exhausted and his breathing even worse so a couple of his consultants came together and started him on a sleep medication. Since being on it his sleep did initially improve however they are reviewing into upping this as his sleep seems to be getting disrupted again. As Jack gets older we see his condition deteriorate and it’s heart breaking but we do try to make everyday happy and as comfortable as we can. Your gifts and cards help him tremendously in this so thank you so much for everything. 

Jack’s anxiety has understandably increased over the past couple of years. He’s always suffered with bad anxiety but recently it’s been so bad he has been pulling his tracheostomy, snapping it and even pulling his gastro and jej  buttons out which causes trauma and emergencies.

Jack loves anything to do with Justin Fletcher, he loves to be pampered, sensory play but no play dough or slime please. Jack is completely nil by mouth. He loves dvds, bright colours, bubbles, Disney, wildlife especially anything to do with  aquarium and tropical fish and animals. He loves wildlife and the world.