Our baby boy Louis was born with half a heart – all the options doctors have given us end with his life cut short

A MUM is sharing her little boy’s heartbreaking health battle after he was born with half a heart.

It’s not known how much time he has left, but groundbreaking surgery could extend his life.

Jodie Hood, from Cornwall, was given three options after finding out her unborn baby had hypoplastic left heart syndrome (HLHS).

All options meant her baby’s life would be cut short.

“It’s the scariest thing to live with thinking that you may outlive your child,” Jodie said.

It’s estimated that with treatment, 56 per cent of children with hypoplastic left heart syndrome aren’t expected to survive past their fifth birthday, according to Little Hearts Matter charity.

“It’s a cruel disease and no surgery is a cure,” Jodie said.

“There are people living in their 30s with the condition, which gives us hope for his future.”

It was during a check-up when pregnant that the sonographer turned off the machine and handed Jodie a scan photo in an envelope.

“She told me I ‘probably won’t want to look at this.’ I cried my heart out,” the mum said.

Jodie, 39, and her husband Gavin, 46, decided to carry the pregnancy to full-term, despite the risks.

They gave their son a chance to fight, even though there was no guarantee of how long he would survive.

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“We couldn’t face the thought of him not being here, so we agreed to give him every chance of survival,” Jodie explained.

Louis was born in November 2020 and rushed into emergency care.

“I was absolutely terrified, as his survival was on the line,” Jodie said.

“The fear was something I can’t put into words, but it holds so much trauma.”

After doctors initially told them he was too complex for surgery, Jodie demanded a second opinion.

She wouldn’t let them give up on her son.

“I said I wanted a second opinion, as I knew miracles were possible,” Jodie said.

“I could only be at peace with losing him if he had been given enough chance to fight.”

At just nine days old, Louis underwent surgery to create a new aorta. The family was told his chances of survival were just five per cent.

They took the risk. Two more surgeries followed at three weeks and six months old.

“Initially, his outlook was very bleak, but he’s really defied the odds,” Jodie said.

“He’s reached his milestones, though he uses a wheelchair because he can’t walk too far.

“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.

‘Making the most of every moment’

“But he has the best personality; the perfect blend of cheeky, cute, loving, happy and all round, a smiley little guy.”

Sadly, Louis lost his best friend when she was a few months away from turning two. The mum of the friend 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.

Louis, who is now four, has made it through tough challenges, but his future is uncertain.

In October 2024, Louis had a heart catheter and stent inserted in preparation for his fourth surgery.

His family hopes this surgery will be in May 2025.

For now, they are making the most of every moment.

“We’re trying to live each day to the fullest,” Jodie said.

“If he is only here for a short time, at least we know we’re making it the best time for him.”

[boxout headline=”What is hypoplastic left heart syndrome?” intro=”HYPOPLASTIC left heart syndrome (HLHS) is a rare type of congenital heart disease, where the left side of the heart doesn’t develop properly and is too small.”][/boxout]