I was so ill, I chose a song for my funeral

I was so ill, I chose a song for my funeral

BRAVE FACE: Emily Hayes during her long battle with sepsis

Carrigaline teenager Emily Hayes tells CHRIS DUNNE about her fight with the deadly disease, sepsis, during which she lost almost half her 11 stone weight

PICTURE the scene: A carefree summer’s day at Church Bay, Crosshaven, and a 17-year-old girl is enjoying the last days of summer with her friends.

Emily Hayes was due to start at St Finan’s Community School in Carrigaline soon after — but the teenager was not to know that a week later, she would be fighting for her life in hospital.

“I was young, fit and healthy,” says Emily, who is now 18. “I had a healthy diet, I was full of energy, dancing, and enjoying life.”

The youngster contracted sepsis, a potentially deadly illness which claims 3,000 lives each year in Ireland.

BRAVE FACE: Emily Hayes during her long battle with sepsis
BRAVE FACE: Emily Hayes during her long battle with sepsis

“Before I got sepsis, I was never sick before,” says Emily. Even though she survived, the illness left a mental scar. “Sometimes, when I’m going to bed, I am afraid to go to sleep in case I die.”

It’s a startling admission for one so young. Now, Emily is back at school, studying for her Pre’s for the Leaving Cert, and enjoying helping her mother, Nicky, run her dance studio in Carrigaline.

“It’s always in my head that I might die,” she admits. “In hospital, when I was faced with it, I hoped I wasn’t going to die.”

The first sign that something was amiss was when Emily went abroad for the first time with a friend and her family, to Barcelona.

“I had a sore throat and remember coughing up black stuff,” says Emily. “I was bed-bound and didn’t eat much, only ice pops.”

When she went on holidays with her own family, she was still on antibiotics.

“I remember Zach, my stepbrother, jumped into the pool and I got bruised really easily when he bumped into me. I slept all day in 38 degrees heat. It was weird.”

Emily, used to making the most of life, didn’t want to lie down, but the signs kept coming.

“After my friend’s 18th birthday, I woke up with a sore ankle and a big bruise on my foot,” she recalls. “I blamed it on the cheap runners I bought in Spain.”

Neither Emily nor her mother, Nicky, had any idea she had sepsis, the infection that can bring perfectly healthy people to the brink of death within hours. It is known as the silent killer.

FAMILY TIME: Emily Hayes with her mum, Nicky, who runs a dance studio in Carrigaline, and her stepdad, Ken.
FAMILY TIME: Emily Hayes with her mum, Nicky, who runs a dance studio in Carrigaline, and her stepdad, Ken.

“I stayed in bed,” says Emily, of the days when the illness got worse. “But when I woke up I was shaking, my heart was racing and I had a tremor on my lips. My teeth were clattering.”

The schoolgirl was frightened.

“I rang mum in the next room. She covered me with a duvet and gave me hot tea. I remember going to the local shop later. It was five minutes down the road. I came back breathless. I was wearing a string top and shorts. Mum asked me; ‘Are you only wearing that?’ My brain was scatty as well.”

Then she saw the bruises.

“My whole side and tummy were covered in them,” says Emily. “I was supposed to meet up with friends for the ‘last hurrah’ before school. I couldn’t move. I got sick. It was like I had the flu and the vomiting bug together.”

Nicky now knew something was badly wrong.

“Mum rang South Doc. I heard the nurse on the phone. She said ‘Call an ambulance straight away’. I was so scared,” says Emily. “I had never been in an ambulance or ever in hospital before.” The next seven hours were crucial. There is an increase chance of mortality for every hour treatment for sepsis is delayed.

“I was isolated straight away,” says Emily. “By now I was delirious. I was hooked onto a drip and my bloods were taken.”

It was serious.

“When the three teams came into the room and explained to me why and what they were doing, I knew we were in trouble. Big trouble.” says Nicky.

Her only child could die.

“The shock was terrible, horrendous,” says Nicky. “Dr Paul Gallagher was on duty in CUH. He said to me, I think we’ve 95% got this.”

While many of us register the 95%, how many of us would also register the 5% in that statement?

Sepsis, the result of a massive immune response to bacterial infection that gets into the blood, had taken hold of Emily.

“I was moved into a room in an isolation ward. I didn’t know what was going on,” says Emily. “I was allocated two nurses and had no contact with others.

“Three teams worked on me, the haemoglobin team, the infections team and the medical team. I had no red blood cells, no platelets. I was neutropenic.”

Emily had less than 1,500 neutrophilis per micro-litre of blood.

“I had no idea what was happening to me,” she says. “I was 17 years old, never in hospital before. I asked how long I was going to be there. I was told ‘maybe a week. We’re not sure what we are dealing with’.”

Emily was in the same room for a month.

“I know that there are 51 tiles on that ceiling,” she says of her ward. “I was cut off from the outside world. I had loads of blood tests and my bone marrow was tested. Leukaemia was mentioned. I was treated with antibiotics and I had blood and platelet transfusions.

“When my family came in to see me, they were all gowned up with masks on.

“My mum and my granny kept me going. Mum was emotional, but I told her I felt fine and I had no pain. Zach and Ken were great. Ken is my step-dad. He is brilliant.”

The family trusted the medics to get Emily well again. “We knew it was serious, but it wasn’t labelled,” says Emily. “It was like I had leukaemia without the cancer cells.

“Dr Gallagher knew about infectious disease and he said we were in this for the long haul.”

Emily lay there, the constant intravenous drip, drip, drip, in her ears.

“I was leaden,” she says. “Just like a rag doll.”

She thought of going back to school, being with her friends, playing with her little godson again and recalls: “All I wanted was to get back dancing.

“In hospital, I trusted them to mind me. You get some people, they want to die. I didn’t. That’s the difference.”

But she could have died. Sepsis accounts for more deaths than breast, prostate and bowel cancers combined, a shocking death toll for a disease so little known.

“At one stage I thought I was dying,” admits Emily. “There was no name for what I had. It was all up in the air.

“I had mum’s phone and I played the song, With You from the musical, Ghost. It was just between mum and me, but she got it. If I didn’t get better, I wanted the song played at my funeral. Mum was always there for me.”

Finally, in week four, there were signs of an improvement.

“My platelet count came up, starting with 20 and then up to 200,” says Emily. “When I came into hospital, I weighed almost 11 stone. When I came out of hospital I was between 6 and 7 stone. It was weird, being so weak, incapable of even lifting yourself.”

She was glad to get home.

“I was so pale, it was unreal,” says Emily.”

The teenager now had to come to terms with what had happened to her.

“Looking back, the bruises, the athlete’s foot, the random thumb infection; they were all signs I was sick. I mean, who gets a thumb infection?”

By the summer of 2017, a full year later, Emily was almost back to full physical health. But the realisation of the enormity of her illness had an effect.

“I had been through a hell of a lot,” says Emily. “I was 18 in June. The turning point was August. I tried to put it all behind me. I was back at my dancing and catching up on school work. My family and my friends were fantastic. My teachers and classmates continue to be very supportive.”

Emily still gets sleepless nights.

“A friend of ours, Tony Hegarty, a psycho-therapist, helped me deal with the post-traumatic stress from sepsis,” she says. “I got a lot of help from him.

“Sometimes I just can’t shake it off. It is still all in my head. I was so young. I was 17. Still a kid. If it happened to me now, I might be more aware. I matured in a year. Very little is known about sepsis.”

Emily still suffers chronic fatigue, a legacy from the disease.

“Often, I’m in a state of exhaustion. I can only read two pages at a time. Then I have to close the book. I don’t use my phone much. I don’t walk our dog.

“Cassie is our new dog. Our old one died of sepsis too, imagine! The new dog brings me new happiness like my godson does.”

Is Emily more conscious now of her health?

“I only had one blood test two weeks after I left hospital,” she says. “There is very little back-up or follow up after having sepsis.”

After her traumatic experience, she isn’t the care-free teenager she once was.

“When I get sore throat now, or the odd cold, I am afraid. I’m back there in hospital, counting the tiles.”

But Emily has other things to focus on. She was one of the lucky ones.

“The Pre’s are coming up. I’m hoping to get General Nursing or Arts in UCC. This year I rocked up to school in time!”

And she might be a beauty queen.

Emily laughs.

“Ah yes, I’ve been asked to enter the preliminary round for the Cork Rose. That’s exciting.”

“At one stage I thought I was dying. There was no name for what I had. It was all up in the air. Some people want to die, I didn’t. That’s the difference.”

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