Despite constant reassurances from health professionals, Andrea knew that all was not well with her baby girl.….
On the morning of the 7th September 2005 at 07.42 am, a perfect little bundle of joy entered the world weighing in at six pounds two ounces. Apart from the cord being tight around the neck on delivery, my labour and birth was normal and very quick. It seemed Ella Kate couldn’t wait to meet us all! We spent the next few days in the hospital as Ella was a poor feeder and was also very sleepy.
When we were discharged, I was surprised not to hear from a midwife or health visitor so, after five days I contacted the hospital, and it seemed I was still on their system as an in-patient! That very same afternoon, a midwife called at our home where she carried out the heel prick test and checked Ella over. I did raise my concerns about how sleepy my baby was and that she was not feeding well. But I was reassured everything was ok and that some babies take longer than others to get into a feeding routine and some babies aren’t as hungry as others.
We were discharged to the community health visiting team and I raised my concerns with them a few times but again was reassured it was all normal. I even took Ella to my GP who told me that she would get there and feed properly soon.
But I wasn’t reassured. By the time Ella was four weeks old, I was having to set my alarm every two hours to wake her and feed her a couple of ounces which she would immediately projectile vomit back up. I still didn’t really know what colour eyes she had as they were mostly closed as she was so sleepy!
I was constantly back and forth to the GP. On one occasion I was told she had a virus which would get better and on a subsequent visit it was clear that he thought I was the problem as he suggested maybe I should be assessed for post-natal depression. But I knew 100% I was not suffering post-natal depression. Deep in my heart I knew that something was not quite right with my baby.
I left the GP surgery in tears and when I got home, I rang the health visitor and insisted on a visit from her. She repeated the GP’s theory that I should be assessed for post-natal depression, but I insisted I was not depressed – there was something wrong with Ella. She was my second child, and I knew this was not how things should be. Thankfully at that point, the health visitor witnessed Ella projectile vomiting after a feed and sent us to the local hospital for a review.
We went straight to A&E and within minutes we were admitted to the children’s ward for tests – finally someone was taking us seriously! After days of various tests and scans Ella’s consultant sat us down and told us there may be a problem with her bowel which needed further investigation. Further tests confirmed that her liver was in trouble, and we were being transferred to a specialist unit.
Dr Barnard, Ella’s consultant in our local hospital, was nothing but amazing. He sat us down and explained everything and said we will be going to Birmingham Children’s hospital where they have an incredible success rate with liver transplants. We had just a couple of hours to arrange for our three- year- old daughter Lydia to be cared for by her grandparents and at 5pm, we started the long worrying journey to Birmingham with our baby blissfully unaware of anything that was happening.
The journey was horrendous – I just could not stop crying with sheer panic and worry. We arrived late at night with no real idea of what was going to happen. The very next morning Ella was taken to theatre for a procedure to try and explain what was happening. The tests continued over several days and as Ella became weaker and weaker, it was decided she should be NG fed. After 10 days we were told that her liver was diseased, but the cause was unknown. We were discharged from Birmingham back to our local hospital in Clywd but every two weeks went back to Birmingham to see her consultant.
Fast forward two years with lots of hospital admissions, catching every bug going, severe itch, and distended abdomen, we went to a routine clinic appointment in April where Ella’s consultant was seriously concerned and made a phone call up to the ward asking when the next transplant assessment bed was available. I clearly remember him saying ‘No – I need something sooner’. We were sent for some blood work and weight checks and when we were called back in, her consultant explained that Ella’s liver transplant would take place sooner rather than later. He said the way things are, she might not see Christmas.
As parents we just couldn’t think straight and felt numb … we were told to go home, and somebody would be in touch. Half-way home we had a phone call asking us to go back the following week for transplant assessment. So,k we returned that week for five days’ assessment and Ella underwent every single test known from head to toe. For us it was tiring and worrying but our little lady just smiled as she always did and never ever cried even when she was in the most awful pain with her huge, distended tummy and her severe itch (which nurses said was the worst they had seen!)
Ella had not had chicken pox, so she had to have the vaccine which put things back by two weeks but before the end of May 2008 she was finally listed for transplant.
It was just weeks later, just before midnight one evening when he had a call from Pete, the transplant co-ordinator, asking us how Ella was and if she had any sniffles. I remember thinking what a daft time to ring us asking these questions. The penny didn’t drop until he said ‘Well you best start making your way to Birmingham, we have a potential liver!’
At 1.15 am we wrapped our little girl up into her car seat all packed up and gave lots of kisses to her sister, who was once again in the care of her grandparents. I felt absolutely awful leaving her, but Ella needed us, and we had to be strong for the next few days and weeks. We arrived at the hospital just after 3.30 am. I was scared stiff, cradling my baby tight in my arms, not wanting to let go of her! She was taken straight for bloods and a cannular insertion, numerous clinicians came to see us, and at 8.40 am it was all systems go. We took her into theatre… she looked SO small in that room with so many people and all that beeping, our little girl still smiling back at us totally oblivious of what was about to happen.
We kissed her on her head and left her with her dolly, lucky Lucy. She still has her to this day, and she is 19 years old now! Lucky Lucy has been in every theatre trip and hospital admission and believe me there have been a fair few!
We walked away sobbing with fear and worry and we were told to go and have some rest as we would need to be strong for when she was back in intensive care. It was seven hours before we heard that she was doing really well and that we should go to ITU for 7pm. The whole day was nothing more than a nightmare. We just stumbled around Birmingham city centre drinking endless cups of coffee peering into shop windows trying to take our minds off what was happening.
At 7.40 pm our little girl, looking so small on a big bed, was wheeled in attached to a million and one loud noisy machines. It looked so scary, but we could see straight away that she was pink and not jaundiced and her tummy was flat. Although I was scared to touch her with all the wires attached, and she was on a ventilator machine, I stroked her hair and kept saying how very brave she was and that she was going to be ok. After 12 hours, she was weaned off the ventilator and her recovery was going brilliantly until the ninth day when she had the dreaded bile leak! That was terrifying. She was rushed back into ITU looking so frail and was then taken into theatre where she was fitted with a bile bag and received a blood transfusion. Thankfully after four weeks with the bile bag and strong medications, the problem was resolved and after six weeks we were allowed to come home!
Throughout her childhood, Ella spent so much time in and out of hospital. She’s suffered with sepsis, ecoli, and every bug known to man. She even had to have her salivary glands removed but she remains a real trooper!
As a family we are naturally passionate about raising funds and awareness of childhood liver disease and organ donation and some years after her transplant we met Lindsey, mum of Ella’s donor Jess (both pictured below). We’re now all really close and Jess will always be our shining star, up above, forever 17 How two families became one thanks to a teenager’s amazing gift of life – North Wales Live
Despite everything Ella has been through and continues to go through -including having to be fed via a peg as she struggles to absorb nutrients from her food- Ella has never complained and continues to deal with whatever life throws at her. She is currently doing a foundation course, as she missed much of her last year of school through illness, and her ultimate goal is to be a paediatric nurse.
We are incredibly proud of her and of course forever grateful to our shining star Jess and her wonderful family who gave Ella her second chance at life.
