© The Sick Children's Trust
Written by Editorial Team, DonateToday
Published: Monday, 19th March 2018
'We had nowhere to stay' - how The Sick Children's Trust helped baby Ella's parents when she was in a hospital across the sea
When Amy and TJ’s baby daughter Ella was diagnosed with a serious condition, she was transferred to a hospital an entire sea-crossing away from the couple’s home on the Isle of Man. The terrified parents had no money for a hotel and no idea where they were going to stay while their daughter was in hospital.
A Problem with Her Heart
‘Ella became ill with a chest infection when she was 11 months old,’ remembers mum Amy Ash. ‘I took her to our local doctor in Douglas on the Isle of Man who prescribed her some antibiotics and sent us home.
‘However, rather than get better she continued to deteriorate,’ Amy continues. ‘She refused to eat, was breathing rapidly and suddenly started vomiting. Ella’s dad, TJ, called his mum who rushed over – she recognised Ella’s symptoms as a sign of a problem with her heart and told us to call an ambulance immediately.’
Ella was rushed to Noble’s Hospital in Strang where the results of an X-ray suggested she had pneumonia, but another showed something a lot more serious. ‘Our daughter looked so small and vulnerable,’ Amy recalls.
‘All we could do was stand there with the words of comfort from our family members washing over us, as we were told Ella had a problem with her heart.’
Having been transferred to Alder Hey Children’s Hospital in Liverpool, Ella was diagnosed with dilated cardiomyopathy – her left ventricle (the heart’s main pumping chamber) was enlarged and weakened.
‘We were devastated,’ Amy says. ‘The doctor said there was a 30% chance Ella’s condition would remain the same, a 30% chance it could improve by itself and a 30% chance it could deteriorate.
‘After a month being closely monitored in hospital, we were sent home but over the months that followed, Ella was readmitted again three times – each time, I thought I was going to lose my baby girl.’
"We had nowhere to stay and were unable to afford the cost of a hotel."
Unfortunately, Ella’s condition did not improve. The doctors responsible for her decided that she needed a heart transplant assessment, and for that she needed to be at the Freeman Hospital in Newcastle upon Tyne.
‘I couldn’t believe it,’ Amy admits. ‘I knew this sort of thing happened, but never once did I think it would happen to my baby.’
There was, however, even more bad news awaiting Ella and her family in Newcastle. The assessment showed that Ella was not actually suffering from dilated cardiomyopathy, as had been believed, but instead her coronary artery was completely blocked – and had been since birth. The little girl needed an operation as soon as possible.
‘We had no idea how long Ella would be in hospital,’ Amy remembers. ‘We had nowhere to stay and were unable to afford the cost of a hotel.’
Fortunately, help with the couple’s accommodation situation was at hand. Amy and TJ were put in touch with Andrew – the Manager of the Sick Children’s Trust’s Scott House facility at the Freeman Hospital.
‘He came to meet us on the ward and explained that The Sick Children’s Trust would provide us with a room, totally free of charge, just minutes from where Ella was being treated,’ Amy says. ‘We didn’t know at that point that we would be staying at Scott House for more than six months, but gratefully accepted the room and moved in.
‘It was a godsend and immediately became somewhere we thought of as home.’
"A baby needed to lose a life to save my daughter's life."
It Destroyed Me
Just three days after the family had arrived in Newcastle, Ella underwent her first open-heart surgery procedure. ‘It was unbearable,’ Amy admits, ‘But at least we were in an intimate environment surrounded by lovely, supportive people who understoof what we were going through.
‘Where Ella came out of surgery and I saw her lying there, I was inconsolable – nothing can prepare you for that; seeing your child on a life support machine and reliant on another machine to pump blood around her body.
‘It destroyed me.’
Ella awaiting a new heart
Devastatingly, even more bad news awaited the family: after the original operation, doctors had hoped that Ella’s enlarged heart would begin to shrink. Unfortunately, it didn’t – it expanded to such a point that one of the baby’s lungs collapsed.
Ella needed to have a tracheostomy tube fitted so she could breathe and, ultimately, she needed a heart transplant.
‘You can’t begin to imagine the thoughts that crossed my mind during those months,’ Amy admits. ‘My baby needed a different baby’s heart.
‘A baby needed to lose a life to save my daughter’s life.’
An Incredible Place
‘It was torture, but we had to remain hopeful. Talking to other parents in the same situation at Scott House helped keep our spirits up. It was a tremendous support and we were able to comfort each other – sharing our fears, but also inspiring hope and reassuring one another that good news was just around the corner.
‘Scott House really is an incredible place. It is so close to the hospital and because there was a direct phone line from our bedroom to the ward where Ella was being treated, at night I felt able to relax a little bit – have a hot bath and then, exhausted and drained, tumble into a comfortable bed.
‘Plus, the amazing facilities meant we could wash and dry our clothes, store our own food in the kitchen, cook nutritious meals of our choice and even have family members over.’
A Story of Triumph
Fortunately, a heart was eventually found for Ella. ‘We were ecstatic and terrified all at the same time,’ Amy admits. ‘She went into theatre that day at 5:30pm and once again, we waited, scared stiff, in Scott House, until she came out of theatre at 2:30am.
‘When we heard the news that the operation had been a success, it was the best news we had ever received.
‘From this point on, our story is one of triumph,’ the mum beams. ‘Ella is doing amazingly well – she has recovered from her operation and has even started to walk again. She is chatty, lively and very, very cheeky. She’s a completely different child, which means I can be a different mother.
‘Knowing that other parents we met in Scott House are still waiting for a heart for their child is extremely upsetting, but at least they have the support of The Sick Children’s Trust.
‘At the moment, Ella and I are living in Newcastle so we can attend her fortnightly appointments at Freeman Hospital, but I am positive that it won’t be long before we get back home to the Isle of Man.’