Blue eyes sparkling, tongue out in a cheeky grin, Ellie Rose Harris looks as full of life as any 16-month-old baby should.
Only the three-inch scar on her chest is a reminder of the heart disease that could have killed her – and the medical marvel inside her that is keeping her alive.
Because Ellie is believed to be the youngest patient in the world with her condition to have a mini defibrillator fitted.
It’s there to combat her Brugada syndrome – a rare genetic illness that causes arrhythmia, disrupting the heart’s rhythm, which can lead to a cardiac arrest at any moment.
Doctors decided to carry out the pioneering surgery after Ellie’s life was saved twice by her quick-thinking gran when she had her first heart attacks at home in front of her parents Matthew Harris and Rachel Hillier on a terrifying night in February.
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The agonising drama continued after Ellie was rushed to hospital where she had a further arrest and nearly died in intensive care before the life-or-death decision was made by a surgeon.
Now only the occasional wide-eyed look on the youngster’s face is evidence of the tiny device – an implantable cardioverter defibrillator – as it restarts her little heart.
It’s the size of a matchbox and sits under her right rib cage.
Proud dad Matthew, 25, said: “We thought we were going to lose her, but she has defied all the odds. It’s amazing.”
And Trudie Lobban, founder of the Arrhythmia Alliance charity, told us: “Ellie is probably one of the youngest in the world to have an ICD fitted.
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“She is extremely lucky her Brugada syndrome has been detected, diagnosed and treated, because she could have dropped dead at any moment.”
Matthew and Rachel, 23, first noticed Ellie Rose wasn’t herself on February 9. Their GP said it was most likely to be a virus.
The next day she seemed to have improved and was playing at home with her aunt Jazz, 16, while her devoted gran Joanne Rogers, 40, watched.
But then the tot suddenly took a turn for the worse and became floppy and unresponsive. Joanne, who had learned CPR skills on a first aid course at work just weeks earlier, knew what was happening and leaped into action.
She performed chest compressions and rescue breaths on her granddaughter for an agonising six minutes before little Ellie opened her eyes and began to breathe on her own – only for her heart to stop again.
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Determined Joanne once again brought Ellie back to life after three more minutes, watched by her anguished parents, before an ambulance arrived.
Ellie began to have seizures and paramedics gave her a cocktail of medications to try to control them before blue-lighting her to Noah’s Ark Children’s Hospital in Cardiff.
The youngster was put in intensive care where she had another cardiac arrest.
Matthew and Rachel looked on in despair as doctors performed CPR on her for 15 minutes and gave her five shocks with an external defibrillator before she was finally stabilised.
Matthew said: “We felt so helpless as they were working on her.”
Rachel added: “It took five shocks to get her back. We just had to stand and watch. We were devastated.”
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When Ellie was put into a coma, her parents were so convinced they would lose her Matthew took prints of Ellie’s feet and turned them into a card for Rachel on Valentine’s Day.
But the plucky tot stabilised and was transferred by air ambulance to Bristol Children’s Hospital.
There she was diagnosed with Brugada syndrome which affects the way electrical signals pass through the heart, causing arrhythmia which can make it beat dangerously fast.
Congenital cardiac surgeon Dr Andrew Parry decided only an ICD – a tiny defibrillator combined with a pacemaker – could save her.
He said: “It’s always nerve-racking operating on a child. These bits of equipment are designed for adults. Children with heart abnormalities requiring this special kit are so unusual. We modified it so it would work in somebody as small as this little one.”
The four-hour op took place on February 25.
Matthew said: “The surgeon was clearly really worried as he said he’d never done it on a child before, let alone someone Ellie’s age.”
The implant sits below Ellie’s right ribs, with wires leading to her heart.
These constantly monitor her heart rhythm and the minute there is an arrhythmia, or an irregular fatal rhythm, it sends a shock to the heart to return the beat to normal.
It works just like the full-size defibrillators now commonly found in shopping centres, office buildings, hospitals and schools to save heart attack victims.
Trudie said: “Years ago one of these devices would have weighed heavier than Ellie would at 16 months. It wouldn’t have fit in her body.
“Digital technology is taking medicine to a whole new level, but Ellie is still exceptionally young to have an ICD fitted.
“It is literally saving her life. Most of the time it won’t even be obvious a shock is happening – you might just see her startle. But without that she’d die.”
The batteries in an ICD last anything between six to 10 years before Ellie will need another operation to replace them – but there is no reason she will not be able to live a long and happy life.
For now her family are just happy to have her home in Abercarn, Newport, Wales, after months in hospital and a stint at Ronald McDonald House in Cardiff, a specialist medical home next to the Noah’s Ark hospital.
Matthew said: “Even right after the operation she was responding so well – everyone was astounded. She was sitting up and chatting the very next day.
“She’s still got a long way to go but we couldn’t be more proud of her.”
Rachel added: “Ellie is showing neurologically that she hasn’t been dramatically affected by any brain damage. She is speaking as normal and every day her movement is progressing.
“She can now sit up and roll over and it won’t be long before she regains the ability to crawl as there is nothing holding our little fighter back.”
