Cameron’s Story

IMG_2510Cameron was born on 15th July 2015 & spent the first 12 days of his life in special care baby unit at Stoke Mandeville Hospital being treated for a chest infection, during this time they discovered that he had Enterovirus. It was believed that Cameron had made a full recovery and he was released home on the 27th July.

On the 28th July @ 3:30pm it became apparent that Cameron was unwell, he lost all his colour.

We decided to take him straight back to hospital to be checked, on arrival at approx 4:15pm he was found to have a faster than normal heart rate and was breathing fast.

After a few hours in Peadiatric A&E he suddenly lost all his colour again, went really cold and extremely unwell – at this point the Paediatric Retrieval Team from the Paediatric Intensive Care Unit at Southampton General Hospital were scrambled to come and collect Cameron.

Michael Griksaitis was the consultant who took the call from Stoke Mandeville, using his expertise he was able to take the team at Stoke Mandeville through the steps they needed to take to keep cameron alive until the retrieval team arrived.

Cameron arrived to Southampton General Hospital at approx 2am on Wednesday 29th July. Later that morning we were told that Cameron has a rare heart condition called Myocarditis, caused to him by a viral infection called Enterovirus.

We were told that Cameron’s chances of making a full recovery were as low as 30%. His heart function at this time was classed as very poor.

The 20 days that followed can only be described as a complete rollercoaster, each day bringing news that we could find hope in, news that was unbearable to be told and everything in-between.

He spent the next 20 days on Life support in a critically ill situation.IMG_2212

During this period of time the consultants and cardiologists were amazing in every way for Cameron, making minute by minute decisions to keep him fighting through these long days and nights of being critically ill.

We were told that Cameron’s heart function was so poor that Heart Transplant could be his only realistic chance of survival, but there are only 3 heart’s per year available in Cameron’s size and Cameron may well be too poorly to take the transplant.

There were discussions about putting him onto EKMO (A Heart & Lung Bypass Machine) but it was decided that Cameron was simply too poorly, he would not have the strength to get himself off it again.

We were told that if Cameron was to somehow pull through this then his heart would take years to full recover, and that was a very big if.

As each day and night passed, hope was fading although Cameron kept on fighting…

More equipment, drugs and machines were added to support him throughout this period…

Basically we needed a miracle…

The team then got authorisation to use a drug called Levosimendan, which helps the heart to function. It comes with some very risky side effects including stopping breathing, but it was Camerons only hope of building up enough heart function to get off of life support.

The drug was given over a 24 hour period via a drip. Those 24 hours for Cameron were very demanding and he had a very rocky response to the drug, after around 8 hours of the dose there were conversations regarding stopping the delivery of the drug but Michael (1 of his consultants) decided that we needed to ride it out.IMG_2359

The Next day Cameron’s heart scan showed there was no improvement, with his heart function remaining very poor.

48 hours later, another scan showed that Cameron’s heart function had improved and while it was still “poor” it has picked up significantly.

On the 17th August Cameron successfully got off his life support machine and was aided with his breathing by an optiflow machine, which puts a flow of pressurized oxygen into him via his nostrils. This was a huge step for Cameron & one which many of the team did not expect him to be able to handle with his heart in such poor condition.

Over the next few days Cameron really went from strength to strength, exceeding everyone’s expectations in terms of his recovery.

On the 24th September Cameron was moved to the High Care Unit On The Paediatric Cardiac Ward within Southampton General Hospital (Also know as Ocean Ward)

Two days later at around 7pm on the 26th of September Cameron suffered from a second cardiovascular collapse along with severe pulmonary hypertension.

He was rushed back to PICU where the consultants, doctors and nurses battled to save his life again and to get vital central & arterial lines into him. These vital lines are needed to deliver the required drugs into his main arteries.

We were allowed into PICU to see Cameron at about 10pm, once they had stabilised him – at this point we were told the we nearly lost Cameron that evening.

Each day his doses of sedation were raised allowing him to rest and he was given another dose of Levosimendan.

On the 2nd September Cameron came off his life support successfully, and was once again put on an Optiflow machine to aid his breathing. Cameron’s heart function was now classed as Mild to Moderate functionality.

On the 8th September Cameron was moved back to the High Care Unit On The Paediatric Cardiac Ward. The next few days brought further improvement in Camerons heart function along with his general well being.

On the 11th September Cameron was taken off his optiflow machine and was breathing unaided, another milestone in his recovery had been reached.


Cameron had a heart scan on Friday 11th September and his heart function was deemed to be within the parameters of Normal! This day was an unbeleiveable day for us all & news that we thought was years away or that we would never receive.

Cameron was transferred to The Childrens Hospital At John Radcliffe Hospital, Oxford on the 18th September, where they would continue weening him from sedation drugs and monitoring his progress.

A heart scan on the 24th Sept showed that Camerons heart function scores 27 out of 28 (with 28 being perfect heart function)

A remarkable recovery, that literally astonished his consultants, doctors, nurses and us as his parents!

Our Miracle Boy…

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