A MUM who claims doctors told her everything was ‘fine’ with her baby says she knew something was wrong.
Her son now in urgent need of a transplant, after celebrating his first birthday in hospital.
Louis Jones, one, has spent almost his entire life in the hospital, having fallen ill when he was just eight weeks old
“Seeing him so poorly broke me mentally,” his mum Jade said
Jade took Louis to the hospital after noticing his skin was mottled but claims to have been told he had bronchitis
Louis Jones has spent almost his entire life in the hospital, having fallen ill when he was just eight weeks old.
A horrifying battle with enterovirus caused severe damage to his heart.
Now aged one, Louis’s life hangs in the balance as his terrified mum, Jade Jones, can do nothing but wait.
In the hopes of giving her boy a ‘happy and healthy life’, the 28-year-old from Wigan is on a mission to spread awareness on organ donations.
She also hopes to encourage fellow parents to listen to their gut and push for answers if they believe something isn’t right.
“Seeing him so poorly broke me mentally,” Jade, who works as a carer, told NeedToKnow.Online.
“When doctors told me what was happening, I was terrified and kept thinking ‘what am I going to tell my other kids?’
“It feels like I’m going to lose my whole world.
“I have spent hours by his bed telling him I need him to get better and that he can’t leave me.
“I’ve had to plan a funeral for my baby, even though he is still alive.
“His only hope is a heart transplant.”
At the moment, Louis is stable and there are other options to support him, such as an LVAD, a mechanical heart.
But this is only a temporary fix.
The boy was born on 11 February 2022 via c-section and at first, appeared to be just like any other healthy baby.
But just three weeks later, Jade, who also has two other children, Sophia, eight, and Ellis, four, noticed that his skin had become mottled and he was struggling to breathe.
The mum took Louis to Wigan Hospital but claims to have been told he had bronchitis – the tot was sent home with nasal drops to help his symptoms.
Jade recalled: “[During the first appointment], doctors didn’t seem concerned, they said he was fine and that he just needed get over the bronchitis.”
But just four days later, Louis suffered seizures and was rushed back to the hospital.
“Over those four days, his symptoms just got worse and he started to have seizures to the point where his whole body was stiff and he was grunting when breathing,” Jade said.
“The ambulance came and took him to the hospital, my adrenaline just kicked in and I needed my baby to be seen and check he was okay.
“Whilst we were there [at Wigan hospital], Louis stopped breathing on numerous occasions which lead to doctors putting him on a ventilator and transferring him to Alder Hey.”
At the Alder Hey Children’s Hospital, Louis was placed on a ventilator.
“I was so scared and it was horrible to see him hooked to the machine,” the mum remembered.
After numerous tests, doctors discovered that Louis was battling with enterovirus, late-onset Strep B, meningitis and sepsis, all of which had sadly caused severe damage to his heart.
Enterovirus is a group of viruses which are usually mild. However, if they infect the central nervous system, they can cause serious illnesses.
Jade says doctors still don’t know why why Louis got so ill to begin with.
Sadly, while at Alder Hey, the baby’s condition continued to deteriorate, and he had numerous cardiac arrests.
In August 2022, doctors had no choice but to place Louis on an organ transplant list as an urgent referral.
Jade said: “Without a transplant, Louis’ prognosis is poor.
“He’s on IV medication for 24 hours a day to help his heart, he can’t survive without them.
“It’s been difficult and financially draining as I can’t work due to being at the hospital.
“My friends have set up a GoFundMe to help me be here with him and my mum and their dad are taking care of my other two children while I stay with Louis.”
The tiny tot is now waiting for his life-saving operation and recently celebrated his first birthday in the hospital.
Despite the tough battle, Jade says Louis is “amazing” and loved by the nurses and doctors who care for him.
She said: “Our family take every day as it comes and we cherish every moment we get with Louis.
“He’s doing amazing and he’s defying all odds, he got that poorly doctors didn’t think he would make it but now he is also starting to talk.
“Louis is a happy boy and he loves all the nurses and the doctors and they all love him, every single one of them goes above and beyond for him.”
The mum hopes that by sharing her son’s story, more people will start putting their names down as organ donors.
She added: “I want my son’s story to be shared to help raise awareness for organ donations and show how much they are needed.
“As a mother of two healthy kids, I completely understand why people don’t donate, because they don’t want to think about their own kids passing away.
“But as a mother going through this, I also understand why organs are so important.
“I hope I can raise enough awareness to save more lives.
“It will give my son and many other kids a chance of survival and the opportunity to live a normal happy life.
“At the time of his transplant, I will be donating Louis’s heart valves to help save another kid’s life and to hopefully stop another family going through the pain of losing their babies.”
Jam Press has contacted Wigan Hospital on multiple occasions for comment but has not yet received one.
Jade said: “I want my son’s story to be shared to help raise awareness for organ donations and show how much they are needed” Read More