A Hull family who spent £5,000 to be close to their poorly baby in hospital have thanked the charity that stepped in to help them

At 36 years old Louise Cowton had almost given up hope of having children. So when she found out she was pregnant it was everything she had ever dreamed of.

However at her 20-week scan all was not well.

“All those years of waiting and weeks of excitement were shattered by the words ‘your baby has a very serious heart condition that she may not be strong enough to survive’. We were devastated and emotionally broken,” recalls Louise, from Hessle.

“Eliana coming along was a miracle in our eyes and it was so important that we focused on that.”

The day after the scan in Hull Louise was sent to Leeds General Infirmary.

“We didn’t have much time to stop and think. We just had to keep going. We knew at some point Eliana would need open heart surgery and we prayed that our little girl was strong enough to get through it all.”

The first few weeks after Eliana was born were like a whirlwind as the tiny baby underwent all manner of scans and tests. Then followed the news she had a rare condition called craniosynostosis in which her skull hadn’t developed properly.

“It was during this time that we found out about Eckersley House, a ‘Home from Home’ run by The Sick Children’s Trust.” explains Louise.

“My husband, Richard, had spent five days sleeping in a chair in the delivery suite before a room became available. Just the fact we were able to hold Eliana and spend time with her was everything we’d hoped for. We started to learn how we could contribute towards Eliana’s care and we celebrated the fact she survived birth.

“We felt very lucky to be given a room at Eckersley House during these first few weeks of Eliana’s life. We honestly had no idea what to expect but the staff were so reassuring and kind to us. We instantly felt at home.”

After eventually being able to take Eliana home after a few months they were back in hospital for her to under go major heart surgery.

“We were put on the waiting list for Eckersley House and by this point had spent around £5,000 on accommodation, food and parking. On the day we were given keys to Eckersley House we’d run out of money to be able to afford to stay in Leeds. It was really the answer to our prayers.”

It was to be their home for the next four months. “That privacy of your own room makes everything just that bit more manageable.”

As Eliana, who turns two this month, recovered from her surgery they were able to take her home.

“Things looked up and we were ploughing on full steam ahead for our first Christmas together when our worlds were turned upside down again,” says Louise.

A scan revealed that Eliana’s bowel was back to front and not working properly and she needed a second major operation.

“Being in hospital over Christmas was heart-wrenching. We’d been so excited for a first Christmas at home, that we really struggled to get our heads around it,” says Louise.

“Eliana ended up needing additional emergency bowel surgery too as she had an intussusception (which is when the bowel folds in on itself) and also contracted respiratory syncytial virus (RSV) whilst on the ward. All this meant her one-week stay turned into a month.

“On Christmas Eve I had to walk away from my daughter’s bedside as only one of us could stay. Her first Christmas morning and I wasn’t able to wake up next to her.

“I arrived at my room in Eckerlsey House around midnight and found a Christmas card, a present for Eliana, a wonderful handmade bauble and some Christmas treats in my room.

“I was absolutely floored by people’s kindness and just knowing that someone had taken time to make me feel less lonely on Christmas Eve away from Eliana and away from my family, turned how I felt, completely around. When you feel someone cares and has taken the time to make sure you feel thought of at Christmas it means so much. I walked over there feeling loneliness like I’d never known and by the time I got into bed I felt like even though I was on my own, I wasn’t alone.

“Strangers caring for you at a time you have no energy to care for yourself because everything you have is being poured into your poorly child – is a feeling I can’t describe. I hope no one has to experience it but if you do please know these extraordinary people will get you through it. If you are a parent currently going through this – you are strong enough, you are amazing and you will get to the other side. Please use Eckersley House and feel at home there because you need it. If you need someone to talk to, ask the staff because they are some of the kindest people we’ve met. You’re not alone.”

Louise is grateful to everyone who has supported the The Sick Children’s Trust

“These families are at the lowest points of their lives, they’re exhausted and frightened and your kindness will go a long way to easing some of that for them,” she said.

“Eliana is doing really well at the minute and we take things day by day. Eliana will need further heart surgery and possible surgery on her skull.

“Whether her care remains palliative or whether a more promising outcome is ahead we just don’t know but we’re grateful for being here and being together in the here and now. Nothing else matters. We send our love and strength to all those staying in hospital.”

To donate to The Sick Children’s Trust, visit sickchildrenstrust.org