A mum is sharing her little boy’s heartbreaking health battle after he was born with half a heart and it’s not known how much time he has left – but groundbreaking surgery could extend this.
Jodie Hood was left suffering every parent’s worst nightmare when she was given three options.
And all of them would end with her baby’s life being cut short.
READ MORE: ‘I have a rare disorder that causes my skin to tear off – trolls say I’m an alien’
The mum-of-three, from Cornwall, had to make the difficult ultimatum after finding out that her unborn baby had only developed half a heart.
Jodie, 39, and her husband Gavin, 46, decided to bring the pregnancy to full-term – despite the risky future.
Now, following three open heart surgeries, with his first at just nine days old, he’s thriving; and the family hope his story will share the message: “half a heart doesn’t mean half a life”.
“It’s the scariest thing to live with thinking that you may outlive your child,” the PE teacher told Need To Know.
“It was emotionally draining when we found out.
“The sonographer turned off the machine without any explanation and then handed me my scan photo in an envelope, before saying: ‘You probably won’t want to look at this.’
“I cried my heart out.
“And then we spent five days in limbo not knowing exactly what was wrong with his heart.
“At our next appointment, it was confirmed that it was hypoplastic left heart syndrome, which in simpler terms, is half a heart.
“It was then we were given three options; medical termination, have our baby and let him pass away after a few hours with no intervention or three palliative surgeries.
“I couldn’t face the thought of him not being here, so we agreed to give him every chance of survival – even if there was no guarantee of how long this would give him, or the potential complication risks.”
Jodie and Gavin, who came to terms with the prospect they may not have much time with him, kept positive in their belief that their plucky tot could have a great life.
In November 2020, Louis, now four, was born – and immediately, he was rushed into emergency care.
Jodie said: “I was absolutely terrified, as his survival was on the line.
“The fear was something I can’t put into words, but it holds so much trauma.
“I remember them telling us that, initially, he was too complex for the surgeries and that we needed to say our goodbyes.
“But something inside me wouldn’t take that as final.
“I said I wanted a second opinion, as I knew miracles were possible.
“And I could only be at peace with losing him if he had been given enough change to fight – and I wasn’t willing to let that be taken away.”
After a few days, the family were told that if they were to proceed with surgery, there would only likely be a 5% chance of survival.
They were willing to take the risk and at just nine days old, he underwent a procedure to create a new aorta, the main artery that carries blood from the heart to the body.
His other two open-heart surgeries were carried out at three weeks old and six months old; all of which aim to improve blood flow throughout the body from the heart.
Since then, he’s gone from strength to strength.
Jodie said: “Initially, his outlook was very bleak and he wasn’t meant to have any quality of life.
“But he’s really defied the odds and proved so many people wrong.
“He’s reached his milestones, though has a wheelchair as he can’t walk too far, but that’s only because his heart is working more.
“It is sometimes hard to see him struggle to keep up physically with his peers and he won’t be able to partake in sports.
“Which might be difficult when he gets older, as we are a very sporty household.
“But he has the best personality; the perfect blend of cheeky, cute, loving, happy and all round, a smiley little guy.”
It’s estimated that with treatment, 56% of children with hypoplastic left heart syndrome aren’t expected to survive past their fifth birthday, according to Little Hearts Matter charity.
Sadly, Louis lost his best friend when she was a few months away from turning two.
His best friend’s mum has set up the Forever Faith Foundation to help offer support to other families who have children with life limiting heart conditions, with Jodie a coordinator for Heart Heroes charity.
In October 2024, he had a heart catheter and stent inserted into his pulmonary arteries to see if his body would be capable of going through the final step of the process.
He came out singing Elton John’s “I’m Still Standing” to prove his bravery.
Two months later, it was confirmed that he will be going through his fourth open-heart surgery, which would reroute blood flow from the body to the lungs without going through the heart.
It’s hoped he will have this in May 2025.
For now, though, the family are making the most of the time they have with him and have recently visited Disneyland in Paris – a “lifetime” dream for not only Louis, but also his two sisters [not named for privacy reasons].
Jodie added: “From the minute we were told there was something very wrong with his heart, we had to change who we were to survive.
“You find strength because you have to when all you want to do is run and hide.
“But you’ve got someone you need to stay strong and fight for.
“It’s a cruel disease and no surgery is a cure.
“There are people living in their 30s with the condition, which gives us hope and a dare to dream for his future.
“We like to think that, with medical advances, he’ll reach an old age, but we know that isn’t a guarantee.
“For now, we’re trying to live each day to the fullest and make the most of the time we have left together.
“I am not the same person I once was – none of us are – we’re forever changed.
“At times, I feel like I’m living someone else’s life, but I would do it all over again to have our Louis.
“Our hope is that he continues to defy the odds and continue to brighten people’s days.
“If he is only here for a short time, at least we know we’re trying to make it the best time for him.”
