Our eldest child, Ellie, was born with two holes in her heart, so when we found out we were expecting another child it was something that was always in the back of our minds. But we never actually thought that our second daughter would also be born with heart problems.
Amelia was born three and a half weeks early weighing just 3lb 11oz, which for a baby who is nearly full term is very small. Because of this she was rushed straight to the neonatal unit within the University of North Durham Hospital.
At this point we had no idea just how poorly Amelia was. At three days old the doctors couldn’t find a pulse in her groin so they decided she needed to be transferred to Freeman Hospital in Newcastle upon Tyne for further investigation.
Our tiny baby needed to be transferred to Newcastle’s Freeman Hospital for lifesaving surgery. We don’t live too far away from Newcastle and have always been very aware of what the Freeman Hospital specialises in although that didn’t exactly put our thoughts at ease.
We had an agonising drive to the hospital, following our baby in the ambulance ahead, all the while thinking about the worst possible outcomes. We felt so distressed as we didn’t really know what to expect or what would happen when we arrived at the Freeman.
She had a scan which revealed she had an aortic narrowing and a large hole in her heart.
We were shocked and had an immediate feeling of dread. It was happening all over again. To have one child with a heart defect is extremely stressful and worrying, but to then find out that our second child had a heart condition was a lot to take in. We didn’t quite believe it.
A consultant sat down with us and explained what Amelia’s condition actually was. He drew a picture of a normal heart and Amelia’s heart and the differences were immediately clear. We felt comfortable knowing what it was, but were still very anxious about what was going to happen next.
Although we live just thirty minutes away from the hospital, the thought of being that far away from our baby – who was just a few days old and was about to undergo major surgery – was terrifying. Her body was tiny - how could she endure such a big procedure? Would she cope? We were sick with worry and couldn’t bear the thought of being far away from her.
Thankfully we didn’t have to be. We were told about a place called Scott House which is run by The Sick Children’s Trust and was just a couple of minutes’ walk away from the hospital ward. Scott House was fantastic. At a time when we were completely lost and didn’t know what to do with ourselves, we were given a place where we could go to make a cuppa and have a lie down, but still remain close to our seriously ill baby.
Amelia made a really quick recovery, but sadly we knew there was more to come. We were told she would need further heart surgery when she was a year old – but she needed to gain weight. At first this didn’t seem like it would be a problem, because after her first surgery Amelia was like a different baby. She was the hungriest little thing we knew – eating everything we gave her! And week by week she was putting on six ounces. But sadly, just a few weeks after being out of hospital, we noticed she wasn’t doing so well after all. Her breathing was irregular and she was almost gasping for air. Our daughter was deteriorating and this was the reality of her heart condition. We quickly made an emergency appointment at the hospital and there we found out that Amelia needed urgent surgery. They couldn’t wait. And rather than being a year old, she was just three months.
We were given a date for surgery – it would be towards the end of December. Waiting for the day to come loomed over us like a dark cloud. We were so worried that our baby who was so young and poorly wouldn’t cope with the stress of the procedure on her body. The little bit of relief we did have though, was knowing we could spend Amelia’s first Christmas at home.
But then we received a call to say that there had been a cancellation and they wanted Amelia in. This meant we would be spending our first Christmas with Amelia in hospital – and Ellie would be spending it away from us. It was really emotional, because on the one hand we were relieved our baby’s surgery was happening soon, but on the other our family was going to be separated on the most special day of the year. We felt torn and heartbroken.
Hospital life this time round was a lot tougher. But with thanks to the amazing staff at Freeman Hospital and The Sick Children’s Trust it was much easier. We didn’t have to leave Ellie with her grandparents and spend Christmas without her because we were once again supported by Scott House, where we could be together as a family and stay whilst Amelia was being treated in hospital. And it really did lift so much pressure off our shoulders.
On the day of Amelia’s surgery, we kissed her goodbye and retreated to Scott House where we waited in the peace and quiet of our private room - waiting for the telephone call to let us know how the surgery had gone.
Thankfully, Amelia’s little body managed to pull through and she was doing well. The following day, Ellie came to see her little sister and joined us at Scott House. Ellie thought it was just as fantastic as we did! She loved the Christmas decorations and all the toys in the playroom. And although at first it felt like Christmas was ruined, it really wasn’t.
Spending Christmas in hospital can be an extremely upsetting time, but the nurses at Freeman Hospital and the team at Scott House made it so special for all of us. The nurses on the paediatric intensive care unit would sit with Amelia and Ellie to make sure they were ‘tracking Santa’ in the days leading up to Christmas. And on Christmas Eve, we asked the Scott House Manager, Andrew, whether it would be ok for Santa to put Ellie’s presents under the tree in the house and he said that wouldn’t be a problem. So on Christmas Day morning, Ellie woke up with all the excitement a little girl should – Santa had managed to find out where she was living, despite her worrying that he wouldn’t know.
Because of Scott House we were able to spend Christmas together, as a family, something that should never be taken away from anyone. We spent the whole day together opening presents, and my dad had even brought us a Christmas dinner to enjoy in the dining area. It was a wonderful thing to be able to sit at Scott House and enjoy food together – knowing we weren’t far from Amelia’s bedside.
After eight days in hospital, we finally managed to bring our daughter home. And since, Amelia has continued to do really well. We even managed to spend Christmas together – the four of us which was absolutely fantastic. It was such a nice experience having both of them at home. We had a truly magical day.
There may be more surgeries in the future for Amelia but nothing too invasive. We’re so thrilled to see how far she’s come. And we appreciate every single memory and moment we with our girls.
We wanted to thank The Sick Children’s Trust for the help they gave us, and for giving us a Christmas together at Scott House when it seemed like that may not happen. So I challenged myself to take on the Great North Run, one of the UK’s biggest half marathons. Along with three other friends, we were sponsored to run for The Sick Children’s Trust and CHUF and raised £2,000! It was the first time I had done anything like it, and at times when I was struggling I just remembered why I was doing it – to thank the charities for helping my family.
Amelia and Ellie’s dad