A LITTLE boy who has spent most of his life in hospital is now living at home for the first time.
This week 18-month-old James French left Alder Hey for his family home in Hawarden, thanks to a portable ventilator and the hard work of medical staff at three hospitals.
Little James, who his mother Lorraine Lowry, 33, described as "a gorgeous character, always full of giggles", was born five weeks before his due date at the Countess of Chester Hospital.
He survived premature birth, only for medics to discover he had a condition which meant his ribs were suffocating him.
Lorraine said: “I went into hospital at 35 weeks and staff said they detected ‘reduced activity’ and had to deliver him.
“The whole process only took about 40 minutes from getting in there to the procedure.
“Afterwards, they told me that if they hadn’t delivered him there and then, he’d have had 20 minutes to live.
“They had to get him out or he wouldn't have survived.
“He was intubated and transferred to Liverpool Women’s Hospital. We were there for about 20 days. They tried to take him off the ventilator a few times but it just didn’t happen.”
James was taken to Alder Hey Children’s Hospital where a series of scans revealed chest and spine problems that restricted his breathing and distorted the organs in his chest.
Lorraine said: “It was only meant to be a visit to Alder Hey but he ended up staying there for almost 18 months.”
Lorraine, an admin worker in a Sandycroft office, and her partner Paul ‘Frankie’ French, 37, a plumber, found their lives split between Hawarden and Liverpool.
She said: “Basically, James’ heart was being pushed on to the right side. His left lung was small, and his heart was compressing the right lung so he couldn’t get enough air.
“They described the problem as life-limiting chest and vertebrae anomalies. His ribs were fused in an unusual way. It’s very rare.
“The way they described it was that the ribs looked like they were the opposite way round to everybody else’s. It causes major complications.”
Most parents bring their babies home within a few hours.
James, in comparison, has grown into a toddler while in hospital.
Lorraine said: “He’s had a few smaller procedures, including an aortopexy (where the major artery is fixed in place to prevent it from compressing the wind pipe) to free up his trachea.”
At seven-and-a-half months, medics presented Lorraine and Paul with a stark choice.
Lorraine said: “This is so unusual it was uncharted territory. Staff at Alder Hey wrote to Great Ormond Street in London to find out if there was anything else they could do – but the answer was no. So they told us the only alternative to a tracheotomy and long-term ventilation was to turn the machine off.
“For us there was no question.”
The family opted for long-term ventilation and an action plan was put in place.
It took six months for Alder Hey to put together a care package, which involved training up six staff to handle James' equipment, to allow the little boy to go home.
Lorraine said: “It didn't seem like it at the time but they said it was the fastest package they’d ever put together.
“At the time I was pretty much living in a flat set aside for parents’ accommodation. We wanted to go home. It was tiring for us, but we were concerned about James, too. The longer you are in hospital the more vulnerable you are to bugs.
“James did catch an infection on the ward and he almost died. He fought it and pulled through.”
Returning to their Hawarden home was a total relief.
She said: "It's an amazing feeling to know he's under the same roof. We can wake up and know he's in the next room.
“We go back to Alder Hey for checks and procedures and he’s still under their care.”
James may need surgery to open his ribcage up if the bones put more pressure on his organs but he’s exceeding every expectation.
Lorraine said: “There were worries the problems could stop him speaking, but it hasn't slowed his development at all and we’re so grateful for that. He’s taking a few steps but we don’t know if he’ll be able to walk in future.”
Although James is reliant on the ventilator, he can get out and about and has been on trips to the park and a farmyard.
On a visit ot a supermarket he pulled tongues and smiled at other shoppers.
Lorraine said: “He's constantly happy. I’ve never seen a child so happy. He's always smiling.
“He loves TV but most of all he wants to play. To him it’s real life. He’ll watch other kids out and about and we know he wants to join in. He runs around.
“If his breathing tube gets looped around his feet, he just steps out of it. He’s so calm while we’ll be panicking.
“The doctors are amazed at how he's come on.
“But as Paul says, we think he's going to show everyone.”
l Lorraine wants to thank the friends and family members who have supported and continue to support James.
She said: “We’ve been updating people on Facebook and he has quite a following on there.
“A lot of people have helped fundraise. Between them they have raised about £7,500 for Alder Hey. Paul's mum and nan are part of Mold Sugar Craft Group, and they were among the first to donate, and my mum has set up fundraising days.
“They sent £600 for the ICU. We've had people do 60km endurance races, Peru treks and the Iron Man in Majorca.
“It's only when something like this happens you realise how many people want to help.”