Family of brave boy, 5, needing heart transplant share his story to encourage others to talk about organ donation

Jake Cathcart, from Moss Bank, was born in 2015 with a rare and undiagnosed heart condition, leading him to suffer two cardiac arrests and a respiratory arrest.

Since then he has become an inspiration for Team 1C, led by his parents and other parents who have children with cardiac issues at Alder Hey Children's Hospital, who have raised thousands to send surgeons abroad to help other children with heart defects.

Jake happily attends St Peter and Paul Primary School and was doing very well, until he took a turn a month ago.

Jake, now five, was rushed into Alder Hey Children's Hospital and later taken by helicopter to Great Ormond Street Hospital, where he is awaiting "one of the biggest heart surgeries you can possibly have".

He's joined in London by his mum Claire and dad Neil, and separated from his one-year-old sister Daisy.

Jake and his little sister Daisy

Claire said: "Our darling boy needs a new heart. This is something we have known now for a few weeks but for some reason saying it makes it feel more real.

"When we took Jake to Alder Hey for observations last month, he was already in end stage of heart failure and wasn’t coping.

"An amazing doctor made the arrangements to get him to GOSH a few days later and we were transferred by helicopter.

"When we arrived , things escalated pretty quickly and Jake was intubated with the ECMO surgical team literally on standby at the end of his bed.

"Neil was racing to get here before Jake went to sleep but unfortunately, his train was delayed .

"We waited for what felt like an eternity in 'the bad news room' expecting the worst, but fortunately that broken heart was strong enough to keep beating without ECMO support. Something that surprised everyone.

"Jake remained ventilated, sedated and paralysed whilst we had some really big conversations with some amazing people.

"By this point we were convinced that there wouldn’t be any hope, but when I begged them not to give up on him.

"That's when I was told 'This is Great Ormond Street, we don’t give up'."

However they were dealt the news that the braveheart fighter needed a new heart.

Jake's Berlin heart has been decorated to look like his favourite character Hiro - and his bear has the external tubes attached to it the same as Jake - when Jake's are removed, the bear's will be too

Claire added: "They offered us hope in the form of a heart transplant.

"We were given the facts, the risks and the harsh reality that agreeing to it, meant that this wouldn’t be forever, but the alternatives were even riskier.

"We were also told that Jake’s heart would need to be supported mechanically in order to get him there."

That's where Jake's external mechanical heart - called a Berlin Heart - came into the picture, which to make it less scary to Jake, the hospital and his have decorated to look like Thomas the tank Engine character Hiro - Jake's favourite.

Hiro was fitted to Jake a few weeks ago via an eight hour open heart surgery, and it does the job of Jake’s heart for him, pumping via 2 chambers on his chest.

The Berlin heart is strong, but it is not without risk. Claire and Neil were told that the main risk would be blood clots and strokes due to Jake being on a high level of anticoagulant therapies, meaning that he bleeds very easily.

Claire added: "It’s been a learning curve, we’ve had training in changing his Berlin heart dressings ourselves and it’s been a lot to take in and accept, but we aren’t really the ones going through it. Jake is, he never complains and just gets on with it, as he always has.

"We are so proud of him, and of his little sister, who is adapting to this new, and temporary way of life so well . We are so lucky to have such amazing kids, and such wonderful support from family, school and nursery.

"The love, care and support we have been given here at GOSH is incredible. We are so grateful. They’ve even given Jake his own BEAR-LIN Heart Bear to help him understand and when Jake has his transplant tubes are removed , the Bear’s will also be removed.

Jake's Berlin heart has been decorated to look like his favourite character Hiro - and his bear has the external tubes attached to it the same as Jake - when Jake's are removed, the bear's will be too

"So now, we wait. For the right heart, at the right time. To give our gorgeous little hero another shot at a full, happy life again.

"Back with his little Sister, his family and most importantly his trains."

However Jake will not only be receiving an organ donation, through his mum signing him up as an organ donor as a baby, Jake's broken heart will soon go on to help others.

Claire explains: "Jake is going to be a super hero in his own way as his heart is going to be donated to research a way of better treating or curing the horrific disease that is Dilated Cardiomyopathy.

"If his valves are ok, they’ll be donated to children in need of heart valve surgery.

Jake is one of the faces of Matalan's Alder Hey pyjamas campaign this year

"We are glad that we are able to do something to help other children, it brings us so much comfort, and it’s going to be a really cool story for Jake to tell at school.

"Although the laws around organ donation have changed, we have been told that the wait for Jake will be a long one.

"There are still many children in need of the gift of a heart, and many are in hospital with mechanical heart support just like Jake and that is why it’s so important to still talk about organ donation and to share your wishes."

In honour of Jake and his fight, the Steve Prescott Bridge will be lit up 'ginger' on Monday, December 14.

His family hope people who see it will use it as a reminder to talk about organ donation.

To learn more about organ donation and how to register go to organdonation.nhs.uk/register-your-decision