Kirkby mum with half-a-heart toddler is having a love celebration for Valentine’s Day

Two-year-old Tobias Blackhurst has hypoplastic left heart syndrome (HLHS), a life-limiting condition which means he was born with only half a heart.

There’ll be balloons, a cake and maybe a showing of his favourite film Cars for Tobias this weekend when his family celebrates Valentine’s Day with their ‘special little boy’.

But as mum Lizz, 33, from Kirkby, gets ready to throw a ‘love day’ party for Tobias and his five-year-old sister Eli-Vieve to make as many memories as she can for the happy toddler, she says: “He was born with half a heart, but there’s nothing half-hearted about Tobias.

“He a cheeky and mischievous little boy who’s absolutely full of love.”

And she smiles: “He’s obsessed with women – he loves to hold their hand and flirt!”

Lizz and youth worker husband Steven, 39, say with more operations ahead and the future uncertain for Tobias, every day is about enjoying their family and treasuring times together.

Valentine’s Day though is extra special, not just because of Tobias’ heart condition but as a reminder of the love he has brought to them all.

“And in a weird way we wouldn’t change a thing.  Of course we would want Tobias to be healthy and if he could have a normal working heart that would be amazing, but he really is a special little boy and his condition makes him who he is.”

Although her daughter was born by emergency caesarean section Lizz, who works part-time for the Home Office, had had a normal pregnancy with Eli-Vieve, and at first everything looked fine with Tobias.

But it soon became clear after he was delivered on January 28, 2022, that it was far from it.

“For about the first 12 hours everything was normal,” explains Lizz, “although I was noticing that he was really sleepy. But then when he was having his 24 hour checks they heard what they thought was a heart murmur, and when they checked his oxygen levels, they were only at 44% which meant he was in heart failure.

“He was really blue by this point and distressed, so they rushed him to resus where he was intubated and given medication to help his blood flow and keep him alive.”

The next day he was raced from Ormskirk Hospital to the intensive care unit at Alder Hey, where he was put on life support and placed into an induced coma.

“I was like a deer in headlights,” says Lizz, “but I assumed he was just like Eli-Vieve. After she was born by caesarean they detected a murmur in her and it was her PDA duct that takes oxygen from a mum to the baby in the womb that hadn’t closed – it’s quite common with a section.  But 10 days after it was closed and all was fine, and I thought it would be something similar with Tobias.

“We just sat looking at him lying there – it was heartbreaking, but we didn’t think it was as serious as it was.”

Lizz and Steven were eventually told that Tobias had HLHS, a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart doesn’t form properly. The mitral valve between the left ventricle and the upper left filling chamber (left atrium) is often closed or very small, and the main blood vessel that carries blood from the heart to the rest of the body (aorta) is also smaller than usual.  It means that the heart is unable to pump blood around the body effectively.

Tobias has already had a non-invasive surgery to put in place a stent to keep the PDA valve open to create extra blood flow, followed by two complex open heart operations to repair and reconstruct his heart and help to make it easier for it to pump blood around his body.

He will need a third operation, a ‘Fontan procedure’, when he is between three and five.

“Tobias has always got a smile on his face even when he’s not well, and he has always bounced back from his surgeries really quickly,” says Lizz.

“But he gets tired very quickly, and if he runs around a lot or gets excited he goes blue. There is a lot he’s not able to do.

“It’s always a concern.

“Things can change so quickly, and we’ve been told these are going to be good years when his oxygen levels are the highest and the best they’re going to be.

“After the Fontan procedure things may be better, but we are here now, and we want to enjoy our time and look forward to many more memories in the years to come.

“There’s not a day when we don’t get out and do something.

“We especially we love our visits to Claire House – and it’s lovely to have somewhere to go. Tobias goes to toddler group there for music and dance sessions, and Eli-Vieve goes too so it’s a treat for her.

“We can have a family swim at Claire House Wirral in the hydro-pool (a normal pool would be too cold for Tobias) and they understand what we’re going through.  There’s always someone to talk to and who will listen; I recently had reiki therapy there so it’s the parents they help as well as the children.”

Kate Boswell, Claire House nursing associate, says: “One of the first times we met Tobias he was very unwell on intensive care. We were able to start building a relationship with Tobias and mum Lizz during this time.

 “We were able to take mementos and do nice things during an uncertain time for the family.

“Once Tobias had recovered, he started to attend our baby group which is supported by health care staff, play workers, physiotherapists and complementary therapists, meaning they can get support in a way other baby groups may not provide – and it was clear how much love he brings to his family. And how much he’s loved!”

Lizz goes on: “With Tobias’ condition, the life expectancy is 20s or 30s, but anything can happen, it’s unpredictable, so we are conscious of making as many memories as we can while we can.  More than likely, he will become unwell and end up on a transplant list…but we don’t know.

“What we do know is we can have happy times and enjoy our family now, and that’s why we’re having the ‘love day’ party to celebrate Valentine’s Day – and our little boy with half a heart but who’s absolutely bursting with love.”

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