Over the past few weeks, we have been hearing from families who have been affected by cases of Acute Paediatric Hepatitis, which has made news headlines around the world. Here Jane, whose three year old daughter was one of those affected, shares her story which she hopes will help others.
Back in mid-March my partner, Alan, was woken by our daughter Lola coughing in the night. When he got to her room, he saw that she was being sick so he stayed with her until she was finished, checked her temperature, gave her Calpol for her tummy ache and settled her back down. The next morning, Lola appeared well but I noticed that the whites of her eyes were a strange colour.
I knew that this was a sign of jaundice and, although a toddler having an upset tummy is nothing unusual, jaundice can be a sign of something more serious. We called 111 and were told to go to the urgent treatment centre at Gravesend Hospital. Here Lola was thoroughly examined and doctors advised that they wanted us to go immediately to A&E at Darent Valley hospital. Staff here carried out further tests and advised us that some of Lola’s blood results were very abnormal and required further investigation. We were then transferred to the specialist paediatric liver unit at Kings College Hospital. Kings started running INR tests, which measure the time it takes for blood to clot. They told us this was a crucial job that the liver does. If this level was to reach four then she would need a liver transplant.
Although this level very slowly increased over the time we were at Kings, Lola did not seem unwell. She was laughing, playing, and walking around so we were hopeful that her little body would fight this by itself and we would be on our way home before we knew it.
Sadly this was not to be. Lola’s bloods were checked daily on the specialist liver ward and it was one of these tests which revealed she had adenovirus. We were reassured that this was treatable with a special medication which could be given to her through an IV drip.
Unfortunately the next day we were given the devastating news that Lola was suffering from acute liver failure, secondary to adenovirus.
Lola’s deterioration was a shock to her parents
Over the next few days, Lola continued to deteriorate; she was transferred to the intensive care unit and put into an induced coma. It was incredibly hard to see our little girl who just a few weeks ago had been perfectly fit and well, lying there hooked up to so many machines. We felt so powerless.
On March 26 we were told that Lola was officially on the urgent list for a liver transplant. We knew that there was a shortage of organ donors so we wanted to start the living donor process as soon as we could. Lola had to be on the urgent list for three days before we could set these wheels in motion. So we started this process on March 29, the day Lola’s INR readings jumped to nine. This was deemed extremely dangerous and needed to be dealt with as soon as possible.
Alan and I contacted the department for living donor transplantation to say we both wanted to put ourselves forward for this operation to save our baby girl. I was told I wasn’t suitable even though I was a blood match but Alan was called in for an urgent appointment for an ultrasound, ECG, X ray, CTC, blood tests and psychological assessments. The second he walked out of the CT suite, his phone rang to tell him he was a match and surgery was scheduled for the next morning.
Alan went into surgery at 8.30am, Lola followed at 10.30am. Both operations went smoothly and Alan donated the left lateral segment of his liver to Lola.
Lola made great progress once back on the ward
After her transplant, Lola’s colour came back really quickly and within 48 hours her blood results were almost back to normal. We did have a blip two days later when a blood clot was found in her portal vein and she needed further surgery to remove it, but she recovered well from that. After 13 days, she was moved back to the ward and another 13 days later we were able to take her home where she has continued to make great progress.
We know that having a liver transplant means that medical checks will be a part of Lola’s life now but it’s brilliant to see her charging around the house, back to her old self. And now we’re in touch with CLDF, we know that we’ll get the information and support we need as Lola grows up. Alan has also made a great recovery from surgery and it’s wonderful for him to know he’s been able to save her life.
Lola and her dad are proud of their scars!
I’m so glad we followed our instinct that day when we noticed the whites of Lola’s eyes had a yellow tinge, and I would urge any parent who notices that to seek medical advice
immediately. You’ll be taken seriously. I cannot fault the care we’ve been given and I’m only too happy to be able to share our story to raise awareness of this condition.
You can follow Lola’s progress on Instagram @lifeafteralivertransplant
