Little Louis set to celebrate magical first Christmas at home after life-saving heart transplant

Jade Jones spent last Christmas anxiously wondering how much longer her baby son Louis could survive.

This year she’s looking forward to his first family Christmas after little Louis got the heart transplant he needed to save his life.

“We were waiting for over a year for a heart for him, knowing that if he didn’t get one he could pass away at any time, he was so poorly,” she says.

“It was terrifying and really overwhelming; I’d spend hours by his bedside just crying because I thought I was going to lose my baby.”

But after a nine-hour operation in August to replace the vital organ, 19-month-old Louis is thriving and looking forward to a normal, healthy life.

“This is the Christmas we feared we might never get,” adds Jade, 29, from Wigan. “We love Christmas and we’ve had some great ones in the past, but nothing is going to compare with this.

“We can’t wait to see him opening his presents. He’s going to get far too many, but he deserves them all after what he’s been through.

“It’s Louis’ first ever Christmas at home and we’re going to make sure it’s magical.”

Louis was born prematurely at 32 weeks on February 10 last year and spent three weeks in the neonatal unit at the Royal Albert Edward Infirmary in Wigan before being allowed to go home.

But he was rushed back to hospital at eight weeks when former care worker Jade noticed he was having breathing difficulties and his skin was mottled, and he began to have seizures. Louis was put on a ventilator before being transferred to Alder Hey Children’s Hospital.

There he was put onto an ECMO machine which helps the heart and lungs function while patients recover from serious illness or injury, keeping blood moving through the body and blood gases balanced.

Louis had several infections including meningitis and sepsis which led to myocarditis, an inflammation of the heart muscle. A third of children with myocarditis never recover from it – and this was sadly the case for Louis. He developed severely dilated cardiomyopathy, which makes the walls of heart become stretched and thin.

The thinner walls are weakened which means the heart can’t squeeze properly to pump the blood to the rest of the body. 

Dr Phuoc Duong, a cardiologist at Alder Hey, says: “Louis’ heart muscle was permanently damaged, and he needed to be in hospital to receive special intravenous medicine to keep the heart pumping. A heart transplant was the only option to enable him to grow and go home with his family.”

Jade, who has two other children, Sophia, eight, and Ellis, five, says it was ‘terrifying’ for her and Louis’ dad, car detailer Keiran Duxbury, 31, to see their tiny baby so unwell.

“When we were told he needed a transplant we were shocked and scared. We went through every emotion you can think of, and worried whether he would ever get a transplant,” says Jade. “They said if he didn’t get a new heart he could pass away, and while we were reassured that he was in the best place at Alder Hey, we were frightened for our son.

“He suffered a number of cardiac arrests, and we just had to pray that a donor would be found for him.”

Despite his condition, Louis adapted to life in Alder Hey where he spent more than a year of his life – and was nicknamed King Louis because he ruled ward 1C! 

“He’s quite a character and he used to walk around the ward when he could, with his walker and drugs trailing behind him,” smiles Jade. “He’s so funny.  He acted like he owned the place – he’s still the boss now!”

In August Jade and Keiran got the life-changing call they’d desperately longed for. A heart had become available, and he was flown by air ambulance with mum and dad to Great Ormond Street Hospital for the procedure.

“Me and Keiran were in a state of shock. We were scared, but filled with gratitude that someone had chosen to donate their loved one’s organs so it would give the chance of life to our son.”

Louis was in GOSH for two weeks before being allowed to go home and, four months post-transplant, he’s doing well: “He loves to dance and play with his footballs,” says Jade, “and when he has a good day we’ll go out and feed the ducks – and he loves jumping into muddy puddles!”

Dr Duong adds: “We’re grateful for the transplant service at Great Ormond Street and Freeman Hospitals to support us to look after Louis. It was a tough 17 months wait, but he now deserves happiness and normality.

“I’ve known him since he was a small baby, and it’s great to see a happy ending. We do our very best and this is the reason we go to work – to make kids better.”

Jade smiles: “To be celebrating our first Christmas at home with Louis is amazing, and to say we’re all looking forward to it is an understatement. It’s the most precious time for us.

“We will forever be grateful to the donor and their family, and we will be thinking of them this Christmas, being without their loved one. Thanks to them we can enjoy every magical moment with ours.”

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