‘On this day last year, our world changed forever...’
World Meningitis Day falls later this month and the theme for 2019 is life after meningitis. One local family who lost their child to the disease exactly a year ago have bravely decided to speak exclusively to the Guernsey Press to highlight the dangers in the hope that no other family will have to experience the tragic loss the disease can bring. Joe Gray’s aunt, Zoe Gosling, tells their heartbreaking story...
ON THIS day last year, our world changed forever when my nephew, Joe, died. He was just 16 years old. He had meningococcal meningitis.
Our nightmare started five days earlier, on Sunday 8 April. It started as a pretty normal day. My sister, Sam, had taken Joe to the out-of-hours doctor at the hospital that morning because he was feeling unwell and had a severe headache. He had vomited several times at the hospital. He had been unwell for 10 days with a non-specific illness and was becoming extremely agitated. The out-of-hours doctor examined Joe and gave him an anti-nausea injection and a pain relief injection. A prescription for antibiotics was given to him for a suspected urine and chest infection. He then went home to bed to rest.
Sam was worried, but there was nothing to suggest how that day would end.
At around lunchtime, I received a panicked call asking me to come up to their house and look after the little ones, as we called them – Joe’s younger siblings Jenson, now 13, and Scarlett, 11. I did, of course. Sam had gone in to check on Joe and it was clear he was gravely ill. She had called an ambulance and she and Jack, Joe’s older brother, had put Joe into the recovery position. They had done the very best they could. While I knew it was serious, the detail was still pretty unclear and confusing. At that time, no one knew what they were dealing with, so we tried to stay upbeat and positive.
My son, Reg, and I spent the afternoon at my sister’s trying to keep things normal. Then came a call mid-afternoon from Joe’s dad – my brother-in-law, Scott – which changed everything. He was crying, and simply said, ‘Zoe, we’re losing him. It’s meningitis.’
It seemed impossible to believe. How could this be happening? This happened to other people, not families I knew. Not my family.
My parents had taken an uncharacteristically last-minute trip to London and it fell to me to call them and tell them the news. I knew it was bad, but I still thought it was going to be OK. We scrambled friends and family together so my brother and sister-in-law and I could get to the hospital. I met my brother in the car park and he was trying to mentally prepare me for what I was about to walk into, but there was no time.
As we approached the Intensive Care Unit, Joe was being wheeled down the corridor in his bed, on his way to a CT scan. Behind him was a wall of ashen-faced doctors and nurses, wheeling every type of equipment you can imagine. I just felt my legs go to jelly and buckle.
I found my sister in the relatives’ room in ICU, a room we made our makeshift home for the next five days. She was wailing, a sound I had never heard before and hope to never hear again. It was pure, raw physical pain. She just kept saying, ‘my baby’s dead, my baby’s dead’, over and over again.
I had no idea what to say. There’s nothing at all you can say. As the hours passed, it became clear that there was nothing that could be done to save Joe. It was unimaginable. Unthinkable.
He was there, but he was already gone.
He had meningococcal meningitis group B (Men B), a rare but often fatal disease (one in 10 diagnosed will not make it), which particularly targets adolescents. Turned out he was the one in 10.
A Men B vaccine was introduced into the vaccination programme in September 2015. In simple terms, if your child was born before this was introduced, and you haven’t paid for them to have it privately, they haven’t had it.
All the following days and nights merged into one. Despite persistent fog my parents finally managed to get home, as did aunts and uncles and Joe’s eldest brother, Josh, who was travelling in Australia.
Joe was the middle of five children. While he was born in Guernsey, the family moved to Scotland when he was seven, returning when he was 14. He had struggled to settle back into school and was frequently in trouble. In many ways, he was a typical teenager. He was testing boundaries, he was experimenting. But lying in that hospital bed, he looked completely perfect.
Just eight days before he was admitted to ICU, he had turned 16. We had the usual chaotic, boisterous family lunch, we stood around him singing ‘Happy Birthday Sweet 16’. He, of course, had hated it, but tolerated it.
Who could have known how our lives would change? How he would be buried in his new trainers, surrounded in his coffin by the birthday presents he never got to use.
There was a strange hysteria that swept across the island in those five days in ICU.
While my sister and her husband were being asked to sign non-resuscitation forms and select a coffin, hysteria was building in the outside world. Tragedy brings out the very best and the very worst in people, fuelled by social media.
We felt that doctors who should have been focusing on looking after Joe were dealing with irate calls from teachers and parents – some simply insensitive, some downright appalling, all deeply inappropriate.
But the team in ICU were simply magnificent, anchoring us and supporting us, creating a safety net and becoming our extended family.
Joe’s true friends came along and sat with him. Some chatted to him and laughed, some cried, some prayed.
While we waited for Josh to come home, we had a chance to catch our breaths and adjust to what was happening. We begged and bribed him to wake up, Scarlett plaited his hair and Jenson sang to him (something that we joked he would never have ordinarily tolerated).
Late afternoon, on 12 April, with the support of the chaplain at the PEH, the Rev. Linda Le Vasseur, we surrounded Joe in a circle of love and said our goodbyes.
At 5.15pm, with his parents by his side, Joe’s life support was switched off. He was 16 years and eight days old.
Then we left, and all went home, and tried to find a way to get up the next day and carry on. We missed the relatives’ room – although it had been an unbearably horrible time, we had actually at times roared with laughter in there, as his friends shared stories that, under any other circumstances, would have resulted in a serious telling off.
Over the following days, his moped became a shrine for his friends, who needed somewhere to go to grieve. There was a strange limbo between when Joe died and his funeral.
Days were consumed with seating plans, sourcing non-sweary teenage songs and finding photos.
His funeral was on a beautiful, sunny day.
We gathered at my sister’s house like the Mob and I remember Scarlett running through saying, ‘Joe’s here.’
The hearse stopped outside, his coffin was amazing, completely covered in photos. We stood and looked at it for a while before getting into the entourage of cars.
My brother rode ahead on his Harley, with a big Scottish flag flying proudly from the back.
When we got to St James, I was charged with getting my sister to her seat at the front. It was absolutely packed and all eyes were on us. Half-way down the aisle I was completely convinced that the front row hadn’t been reserved for us (which, given Sam had done the seating plan at least 150 times, would have been technically impossible). Of course it was fine, but we just wanted everything to be perfect. It was the last thing we were going to be able to do for him.
Joe was carried in by his dad, brothers and uncles. We played his music, we told his story.
Photos showed him growing from a smiling newborn to a cheeky toddler, a growing lad to a cool teenager. Those who only knew him as a child saw him as a teenager growing into a young man; those who only saw him as a difficult teenager saw him as a gentle soul at the very heart of his large, loving family.
Local jeweller and cherished friend Becky Rowe had come up to ICU and taken imprints of Joe’s finger, which had been cast in silver. She worked wonders to have them ready for us to carry on the day.
I sat there listening to a room crying. It felt like the whole island was crying with us.
When something like this happens, it’s very hard to find a way forward. There is no good reason that it has happened, there was no time to prepare, not that any amount of time would have been enough.
Life will never be the same again. We will never see Joe grow up, get married, or become a dad. There will always be an empty chair at the table, a person missing in the photographs.
Nothing we can do will bring Joe back, but by telling his story, we might help raise awareness of meningitis and its symptoms and possibly, hopefully, prevent this from happening to another family.
- An independent investigation was carried out by HSC following Joe’s tragic death and concluded that his care was not deficient, though new practices have been implemented. Primary care professionals across the island discussed the case and highlighted sepsis guidelines and concluded the importance of raising awareness among all health professionals of meningitis. Health care professionals in both the Emergency Department and Out of Hours service are working more closely with joint triage, so patients presenting in these areas are now seen by two doctors, instead of one, which was previously the case. Medical director Peter Rabey said: ‘This was a very rare occurrence and deeply distressing not only for Joe’s family and friends, but also for the clinicians involved in Joe’s care. Losing a child is a terrible thing to happen and on behalf of Health and Social Care, I would like to once again extend our deepest condolences to the Gray family.
FACTS ABOUT MENINGITIS
MENINGITIS is an infection of the protective membranes that surround the brain and spinal cord (meninges). It can affect anyone, but is most common in babies, young children, teenagers and young adults.
Meningitis can be very serious if not treated quickly. It can cause life-threatening blood poisoning, also known as septicaemia and result in permanent damage to the brain or nerves.
Symptoms to look out for:
The symptoms of meningitis develop suddenly and can include:
- a high temperature (fever) of 38C (100.4F) or above
- being sick
- a headache
- a blotchy rash that doesn’t fade when a glass is rolled over it (this won’t always develop)
- a stiff neck
- a dislike of bright lights
- drowsiness or unresponsiveness
- seizures (fits)
These symptoms can appear in any order and some may not appear at all.
Getting medical help:
You should get medical advice as soon as possible if you’re concerned that you or your child could have meningitis. Trust your instincts and don’t wait until a rash develops. Call 999 for an ambulance or go to the Princess Elizabeth Hospital if you think you or your child might be seriously ill.