Meningitis in your words

Oscar Stewart's story

  • Location: England
  • Categories: Pneumococcal
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Bereavement
Oscar Stewart

On the morning of October 1st 2004 Oscar James Stewart was born. He was a fantastic baby – bright, calm and giggly. He loved his food and was a bit of a bruiser, but his most distinguishing feature was his vivid big blue eyes.

One Sunday morning when Oscar was 7 months old, he woke up early in the morning crying. Now this was not like him at all; he loved his sleep and he also was not one to cry (how lucky were we!). His dad and I got him up and took him downstairs but he was acting out of character. He loved food and usually could not wait for us to get his breakfast ready, but this morning was very different. He seemed dozy and cuddly; and his feet and hands were very cold. He was generally poorly.

His Dad went to work (which that day meant a flight to Los Angeles!) and I sat on the sofa for a cuddle and to make my little boy happy. I was not worried as I just thought he had caught one of those 24 hour bugs.

But as the morning progressed he did not improve, he started to look sad, so I took him to the emergency doctor in Stroud. He checked him over and said he had a bad chest infection and that he may need to be given a course of antibiotics via a drip, so in no panic Oscar & I trundled off to Gloucester Royal Infirmary.

On route Oscar was violently sick in the car – I mean Exorcist moment! Then I panicked! When I got to the Children’s ward they put us in a room and monitored Oscar for the next few hours. By lunch time he was back to his happy bubbly self and wanting food. I felt a fraud and that my “first time mummy” syndrome was obvious for all to behold!

After some lunch he cuddled into me and had his midday doze as he always had done, but about 30 minutes in I looked at him and his lips had turned a violent shade of blue. Immediately I called for a nurse where he was taken off me and rushed to another room where he had 2 doctors and 3 nurses surrounding him as they tried to get a line into him to give him a course of antibiotics. I was beside myself. In the end they found one in his scalp.

'It was then that they said that word that no one wants to hear, “we suspect your son has meningitis”.'

It was then that they said that word that no one wants to hear, “we suspect your son has meningitis”. They told me then that he would need to get rushed to the Bristol Children’s Hospital where he will receive specialist treatment. Obviously at this point my life became a bit blurry. The nurses called my parents who lived locally, who came over and tried to comfort me. My concern was that at this point his Dad was in the air on route to the USA and someone needed to get him back now. I had no idea what was going to happen.

Within an hour there was an emergency team from the Paediatric Intensive Care Unit, Bristol’s Children’s Hospital in Gloucester; one consultant, two nurses and three paramedics. They had to stabilise Oscar and put him on life support before moving him, which took another 2 hours. They then blue lighted him to Bristol with me following in the other paramedic's car.

We arrived at PICU (Paediatric Intensive Care Unit) at 9pm where I was informed that my son was not doing too well and that the disease was very virulent. They took me to him, where he was now hooked up to a heart monitor, breathing machine, 4 IV drugs to maintain his bodily organs. He had also swelled in size and now the rash that you are told about had started to appear.  All I could do was sit by his bed, cry and hold his hand and wait. He had a lumbar puncture performed to diagnose the strain, it was pneumococcal septicaemia.

Oscar had a specialist nurse with him 24 hours a day on a rotation of 12 hour shifts. He had a consultant see him every hour, ensuring his condition was not deteriorating. The next morning his kidneys started to give way and he was put onto continuous dialysis as his body went into organ failure. His Dad turned up just as he was being hooked up; he had landed and jumped on the first flight back.

Throughout the course of his treatment Oscar was subjected to 3 x-rays every day, two heart scans, daily visits from a cardiologist, a daily visit from a surgeon keeping an eye on the swelling in his abdomen, a twice daily visit from a physiotherapist and a daily visit from a nutritionist. There was not a moment when he was unobserved.

In the second week he started to turn a corner and he was fighting back. As his condition improved they decided to take him off some of the drugs he had been on to start waking him up. As he did he looked weird, his eyes were not responding and they thought he may have brain damage. He was taken by 4 staff to have a MRI to see if any brain function had been compromised. Luckily the result came back as negative and after a few hours he started to react normally to external stimuli. The reaction had been due to withdrawal symptoms from taking him off the drugs he had come to depend on.

By the end of the second week I had my first cuddle with my little boy, who up until then all I could do was sit by his bedside day and night. The staff were amazing, as well as looking after my son they made sure I ate and had drinks; put me up in some accommodation on site so I could sleep the few hours a night that I needed to stay focused. They kept me sane as best they could and let me get involved in his day to day care. I became a dab hand at reading out important figures for their records and aiding in his daily washes.

The night he was released from PICU and sent to a ward, the care continued. I had a pull down bed next to his cot so I could stay with him. The next day he was allowed home to continue his recovery. But the hospital’s care did not stop there.

Oscar had appointments twice a week with consultants checking his heart and his recovery. He was also at this stage appointed a plastic surgeon as the rash that had occurred had killed his skin on his thighs and arms, and was also going to lose two finger tips. We saw this surgeon and specialist nurses, who dressed his wounds, twice a week and taught me how to look after them at home and redress them if needed.

The care just never stopped and the help available to me was just inspiring.

"A month almost to the day that he had been released Oscar woke up in the middle of the night screaming. "

A month almost to the day that he had been released Oscar woke up in the middle of the night screaming. He was burning hot to the touch and was not happy at all. This time I jumped and immediately took him to Bristol Children’s Hospital’s Accident and Emergency. There they discovered his heart rate had gone sky high and was almost twice the speed that an average child’s heart rate should be. After three hours of intensive treatment to get his heart rate down, things seemed to be slowly getting back to normal. But they were mistaken…as they tidied up around him and let me next to him I noticed the rash had started appearing again! He was taken immediately back up to PICU where the same staff that had wished us a fond farewell a month before looked on in shock as we reappeared through their doors.

"Unfortunately, due to his body still recovering from the first case of the disease, he struggled to fight for a second time. "

Unfortunately, due to his body still recovering from the first case of the disease, he struggled to fight for a second time. He went back onto dialysis and his heart stopped and was restarted twice.  He did try though, and the staff, who at this point never left his side once, tried their up most to help him. The doctors informed us that his body was not strong enough and that all the machines were basically keeping him alive and we had to make the hardest decision that any parent has to make; if his heart failed once more then we knew that was him telling us that he had had enough. Sadly at 6pm on the 29th June Oscar passed away in my arms with his Dad, and grandparents around him.

Rachael Stewart
February 2018