Connor's Last Few Days

What you are about to read is hard hitting and very upsetting but I'm afraid I cannot sugarcoat what happened to Connor and by the end of reading his story, you will hopefully understand why I felt the need for a website on his behalf. Connor taught me so much throughout his life and I feel he continues to teach and create awareness to hopefully help and support others.

On the 5th January 2025, Connor went into hospital with Flu A and double Pneumonia. He was critically unwell and placed into an induced coma as he was struggling to breathe on his own. Connor was supported in the Intensive Care Unit (ICU) for some time.

Connor struggled with his recovery in the early stages of his diagnosis, therefore he was transported to London hospital to receive Extracorporeal Membrane Oxygenation (ECMO) treatment which supported his lungs, allowing them to rest and heal.

After a few days, Connor returned to local hospital to continue his recovery. Connor had a tracheostomy to support his breathing and to clear the excretions in his throat. This allowed him to breathe more independently and was able to come out the coma.

He eventually recovered from Flu A and Pneumonia.

Around the 20th February, we were planning and having talks with his supported living carers to enable him to go home to continue his rehabilitation.

Connor's tummy was beginning to look larger than normal a few days prior to losing him, particularly on Monday the 24th of February.

I had told a Physiotherapist that I was not happy with his distended tummy, so he requested a consultant to come and look at him. I explained to the consultant twice, that Connors tummy did not look right to me. He asked me what I would normally do if/ when Connor was constipated. Despite feeling that this was not the issue, the consultant went ahead and prescribed laxative and suppository for constipation. Connor's tummy had been examined in the morning, but no further physical examination was completed on the Monday afternoon.

Connor was then moved to a general ward, not High Dependency Unit (HDU) as it had been discussed that he would continue his rehabilitation at home.

On the 25th February I decided to go into hospital in the morning instead of the afternoon, after hearing Connor had an unsettled night. I would just like to add here that I was with Connor everyday from the moment he was admitted until he was turning a corner, then I went in every afternoon.

When I was not there he was being supported by care staff from his home. What I saw, I should never have seen. What I then did for Connor, I should never have been left to do.

When I visited not long after the morning ward round, my son was showing obvious signs that he was in severe pain and distress. I saw his poor injured face, then I saw his huge distended tummy, his finger tips and his toes were blue and he had mottled skin.

Five clinical staff had seen Connor that morning at 09.30 and when I asked what they had observed, the answer I got was that they 'noted his mottled skin'.

Physios still wanted him to do his physio that day but I told them this was not possible due to how unwell he was.

I was also left to empty his stomach contents of litres of faecal liquid through his gastrostomy.

Connor's dehydration was off the scale and eventually when the medical staff decided to take his blood pressure they couldn't get a reading.

Absolutely no one caring for Connor overnight and into the next day, saw any of the signs that were blatantly obvious to me. Not one person looked at Connor and thought he is in trouble and needs immediate help.

That's what I'm really struggling to understand. No one saw what I was seeing. Did people just think that it was all 'normal' for Connor to look and behave that way?

Sadly, Connor passed away on the 26th of February, 2025.

His cause of death stated on the coroners report that this was due to a Small Bowel Obstruction (SBO), which cut off blood supply to his small bowel which was complicated by adhesions. His small bowel died, and he suffered multiple organ failures.

Symptoms of this are: abdominal distension, abdominal pain (often intermittent), nausea and vomiting, high-pitched bowel sounds, diarrhoea, and then inability to pass gas or stools. Later signs if untreated are more consistent severe pain, frequent and forceful cramping, extreme bloating, dehydration, and infection, such as sepsis due to perforation.

Connor would have been in severe pain that lasted over 20 hours. If Connor's passing was not avoidable (This is being investigated), his suffering certainly could have been. This has happened too many times before and will likely happen again but I am hoping by sharing Connor's story and providing a platform for awareness and information we can try to stop unnecessary pain, suffering and avoidable death.

Connor was not only non-verbal, he had no sounds at all due to recently having his temporary tracheostomy out so he couldn't even make distressed sounds. His only way of indicating that he was in pain was to hit himself. His behaviour should never have been overlooked. Had someone listened to him by way of seeing what he was doing to himself and acted upon it, he would not have suffered the way he did. Sadly, Connors non-verbal cues were not taken seriously in an environment that was meant to be safe for him. He hit himself so badly, more so than he had ever done in his life, and no one stopped him or thought that he was obviously trying to communicate his feelings and distress.

It is truly beyond belief how many people looked at Connor over his last few days and thought it was 'normal' for him to look and behave in such a way.

Something has to change SO THIS DOES NOT HAPPEN AGAIN!