At 36 years old I had almost given up hope of having children, so finding out I was pregnant was everything I’d ever dreamed of.
At our 20 week scan however 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.
Eliana coming along was a miracle in our eyes and it was so important that we focused on that. The day after our scan in Hull we were sent to Leeds General Infirmary where would be looked after as the children’s hospital was equipped to take care of Eliana’s multiple and complex heart defects. 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. Echocardiograms, ultrasounds, MRIs, you name it – she had it! Then followed the news she had a rare condition called craniosynostosis in which her skull hadn’t developed properly. There was a lot to take in quickly.
“Everything you could possibly need was catered for.”
It was during this time that we found out about Eckersley House, a ‘Home from Home’ run by The Sick Children’s Trust. Eckersley House has 22 bedrooms but often has a waiting list because of the number of families that need a place to stay. 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. Walking into the room we couldn’t believe it. Two extremely comfortable beds, a sink, wardrobe and drawers. It was so much more homely than we’d realised it would be. Everything you could possibly need was catered for.
After spending a few months at home, we were back in Leeds as Eliana underwent major heart surgery to alter her circulation and take pressure off her heart.
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. For the next 4 months we had a warm, comfortable place to call home which meant we didn’t have to travel, we were close to our daughter and had somewhere to go when we couldn’t face the world! That privacy of your own room makes everything just that bit more manageable.
As Eliana recovered from her surgery we 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. Eliana needed her second major surgery as a scan found her bowel was back to front and not working the way it should. There was a real danger this could cause her serious complications so surgery was unavoidable.
“The times Eliana has needed to be in the paediatric intensive care unit or high dependency we knew we would be unable to sleep by her side. That’s when knowing you have a bed at Eckersley House is such a reassurance as you’re only a stone’s throw away.”
I can’t lie. Being in hospital over Christmas is heart wrenching. We’d been so excited for a first Christmas at home, that we really struggled to get our heads around it. 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!
Eckersley House made this time easier. From homemade blankets to coming into sandwiches made in the fridge for us…. the acts of kindness are appreciated so much. 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 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.
“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.”
If you are someone who has supported The Sick Children’s Trust this Christmas, thank you. From someone who has been on the receiving end of that kindness…. thank you from the bottom of my heart. 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.
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.
Louise Cowton, Eliana’s mum
