'Worst feeling in the world': Family given place to stay while five-week old baby fights heart condition

For many parents, the prospect of leaving their poorly child miles away in a hospital room is as horrific as the illness itself. That is where two Leeds charities stepped in.

Over the last 10 years, The Children’s Heart Surgery Fund has raised more than half a million pounds for The Sick Children’s Trust - the charity who run Eckersley House

Eckersley House gives families a place to stay just a stone’s throw from the Leeds Children’s Hospital while their child receives vital and life-saving treatment.

As part of the Yorkshire Evening Post's Have A Heart fundraising campaign, Aiden and Beth, who live in Bradford, opened up about the vital support they've received.

Their daughter Arabella was diagnosed with hypoplastic left heart syndrome when she was just two weeks old.

The mum-of-two said: “I don’t know what we would’ve done if we’d had to travel home every day.

“I couldn’t have left her. We’d of been sleeping in the waiting rooms or on the chairs at the side of her bed.

"I went through pregnancy thinking everything was normal and as we were getting ready to go home our world just came crashing down.

"It was the worst feeling in the world and I could never have left her alone in the hospital.

"The thought of being away from her if she needed me - I can't even bear to think about it."

The young couple has been staying in one of Eckersley House's 23 rooms ever since Arabella's diagnosis.

It has been a difficult time for the family who had been told by doctors that their baby girl may not survive.

Dad Aiden, a self-employed ground-worker, said: "When she was first born they thought she had a lung problem because her oxygen levels were down.

"We went to four different hospitals in just four days because they couldn’t figure out what was wrong with her.

"It was a really scary time and each time we moved hospital we had a priest come and bless her because there was a big chance she wouldn’t survive the move. It was awful.

"Finally after tests at the LGI, they found out that she had Hypoplastic Left Heart Syndrome."

He added: "That day was the worst day of our life because the doctors told us they wanted to operate on her but the chances were that she wouldn’t make it through surgery.

"They didn’t think she was going to survive so we called the family and had her baptised.

"We were absolutely devastated."

However, little Arabella proved to be a fighter and her oxygen levels raised to a stable level.

As Arabella was so small and her organs affected by the medication, surgeons opted to perform a Norwood Hybrid operation on her.

They put three temporary stents in her heart and two bands, in the hope that it will allow her enough time to gain weight, let her kidneys get better and recover for later operations.

Beth said: "It was the best feeling when we got the call and were able to rush over from Eckersley House.

“She’s recovered so fast and within three or four days we were moved onto the Children’s Ward.

“It wasn’t long until she came off the ventilator and we could hold her again - it was the best feeling in the world."

The young parents do not know when Arabella will be well enough to go home and it is likely that she'll need to have more surgeries.

However, being able to stay in Eckersley House has allowed them to have a sense of normality during the difficult time.

Beth said: "We've had everything you could want. You have your own fridge, cupboards, washers, dryers, irons. There’s everything that you have at home and even toys for the kids.

"We've been able to spend time with Arabella as a family because there's space for my son Bobby-Josh, 6, and Aiden's son AJ, 18 months, to come and visit.

“We don’t know when we will leave as she’s just not ready yet and that’s why Eckersley House is so amazing. We’ve got it as long as we need it for. It is such a big help, it really is."

Aiden added: "Imagine your baby being poorly and living far away. We only live 10 or 15 miles away but other people don't live anywhere near.

“We’ve even met people from Ireland with children in the LGI. If it wasn’t for Eckersley House, they might not have been able to afford to stay in hotels.

"There’s a phone in every room and if it rings we’re over to the hospital. It takes two minutes.

"The support we've had from the staff at Eckersley House has been amazing. Any family that is going through what we’re going through needs that support.

"Eckersley House has been a life-line for us. We are so grateful."