A baby who was born with “half a heart” will spend his first Christmas at home with his mum and dad after being discharged from hospital in time for the festive season.
Louis Parker Smith, now nearly one, will be doted on by parents Josh Smith, 21, and Ellie Atkinson, 20, following a gruelling year that included long stays in medical care and accommodation for the whole family. During that time, Louis has undergone surgery about five times, which was needed to treat him for hypoplastic right heart syndrome - meaning an underdeveloped heart on one side.
Louis is now home in Widnes with his parents for his first Christmas, one that would never have happened had Ellie and Josh accepted initial advice at 20 weeks of pregnancy from a previous, unidentified medical establishment that the only option was termination. Having rejected that, Ellie was transferred to the care of Liverpool Women’s Hospital, where Louis was born at 8lb 2oz.
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Two days later he was moved to Alder Hey, which has looked after him since. This included a series of operations, with another procedure to take place when he’s between two and four years old.
He will also be on medication for life to draw out excess fluid from around his heart.
His most recent stay at Alder Hey lasted around eight or nine weeks, during which time lorry driver Josh and sales assistant Ellie stayed over too, with Ronald McDonald House providing accommodation.
They were not sure when Louis would be able to go home, but received the good news a few weeks ago.
With Josh booked off work until into the New Year and Ellie off looking after Louis, the family can enjoy a first Christmas together that might never have happened.
Josh told the ECHO: “They came to us one day and said they’re going to do all of his OBS, and then said he can come home.
“It was two or three weeks ago, it was quite quick - they’ve obviously been doing the planning in the background, and we were concerned if we were going to be in for Christmas.
“We were there constantly, we never went home in the eight or nine weeks he was there.”
Asked how they were all doing, Josh said: “He’s good, we’re doing well.
“We’re back at home now.
“He was in about two or three weeks ago maybe.
“He’s on the mend now, he’s getting a bit better.
“This time he was in for about nine weeks, but since he’s been in and out, when he goes in he’s in for a minimum of two weeks - we’ve been staying at Ronald McDonald House at Alder Hey.
“When he’s in hospital, mum stays with him during the day and where I work is only about 20 minutes away from there.
“He’s got to have another surgery between two and four years old, and he’s on medication, furosemide, he’s on that for life - with him having a heart problem his heart has a lot of fluid around it and that medication draws it out.”
Impressed with Louis’s recovery since then and the surgeons’ skills to “do what they need to do”, he said: “Everything went accordingly.
“The recovery time for that surgery is 10 weeks, he’s recovered quite quickly.
“Everything went as it should.
“It’s mad what they can do.”
Josh added: “He’s back to himself.
“When he was in hospital we could tell when he’s not well.
“He’s a very loud baby and likes to make himself known in the house, but when we were in the hospital, he was dead quiet.
“Now we’re back home he’s more lively and back to himself.”
Their dedication to their son means that while not at Alder Hey, Josh has been working “as many hours as I can” to support his young family, and he also had to take a week or two off to help Ellie and Louis.
In April he will be taking on the Three Peaks Challenge in April with Louis’s uncles to help them further, and to look to buy specialist equipment including a type of mattress that can monitor Louis’s heart rate at night and to stay alert for if it drops.
Louis, Josh and Ellie’s situation has inspired family friend Meg Murphy to launch a fundraising appeal on their behalf, in which she set out the story of Josh and Ellie and their “brave little trooper”.
ECHO readers can find more information or support the “Louis Parker Smith, a true heart warrior” appeal at gofundme.com
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