Like any seven- year- old, Jasmine loves this time of year, but two years ago, things were very different as her mum, Amy, explains.
Jasmine became unwell very suddenly in mid-December 2023 at five years old. Whilst she had been really tired in the weeks preceding her hospital admission, we put that down to winter bugs and it being the end of a very long school term. We had no idea her liver was failing.
Jazzy’s first symptoms were sickness, and then she became jaundiced. Our GP sent us to A&E and things progressed very quickly. Lots of tests followed, and we were transferred by ambulance to Kings within 24 hours. Within 48 hours of first being admitted to A&E we were made aware that Jasmine would almost certainly need a transplant and the most likely cause of her liver failure was Wilson’s Disease. Within 72 hours she was sedated in PICU and unlikely to be awoken until after transplant surgery and, of course, there was no knowing when that might be. Whilst she was sedated, Jasmine would receive dialysis to try and make her as healthy as possible ahead of surgery.
We were told Jasmine’s need was urgent and it was just two more days before we got the call. This is the first time I have sat down and considered how quickly everything happened. It seems strange to say, but at the time it felt like a lot longer, as if time had slowed down. Jasmine’s surgery started at midnight, six days after she became sick. We retreated to our room in Ronald McDonald house during surgery, where I slept (miraculously) and Jasmine’s Dad, Sam, (a night owl) messaged friends and family and prayed. Our transplant coordinator called every couple of hours to let us know how things were going. On the third call, not long after 6am I picked up and was told the surgery was finished and Jasmine was back in PICU.
The transplant surgery was a success, and her recovery was just as swift, we were back home after just four weeks, and I’m delighted to say we’ve now celebrated Jasmine’s second “liver birthday”.
Jasmine returned to school after February half-term. Her return was made easier with the support of her teachers who had taken time to video call with her whilst she was at home. Jasmine loves school, loves dancing and singing and has recently joined musical theatre class which she adores. She is full of joy. She really missed swimming in the first six months post-transplant, but she has now returned to the pool.
In the main, Jasmine has remained in good health. However, five months post-transplant she picked up an awful tummy bug and couldn’t keep anything down. It was the same week that Jasmine’s dad was attempting an epic cycling challenge to raise funds for the Children’s Liver Disease Foundation/ British Liver Trust. It was a bank holiday weekend which made it more difficult to get medical advice. I was trying to be brave, but I was scared and I found it difficult to advocate for Jasmine in a busy A&E. She was eventually admitted and put on a course of antibiotics, and I am grateful to the team at Kings for being her advocate and her consultant at our local hospital who has since put in place processes that will flag Jasmine as high-risk/vulnerable if we face a similar situation in the future.
We have biannual visits to Kings for check-ups, and the consultant I mentioned at our local hospital sees Jasmine once a year also. Blood tests are now quarterly, which is wonderful, because they are by far the hardest part of Jasmine’s follow up treatment. She is really good with taking her medicines but is incredibly anxious about needles. We ran out of good veins in her arms when she had her transplant and had to look for veins in her feet. Since then, it has, on occasion, taken up to half an hour to ensure Jasmine is calm enough to take the immunisation injection or to have her blood taken (we have also once had to walk away and agree to try another day). Our local hospital is so patient and supportive, allowing her to make decisions and rules about which tourniquet, how they approach her, where she sits, and whether she wants a sticker, making her feel more in control. We’ve come a long way in the last two years thanks to the staff at Frimley Park Hospital, and a lovely GP surgery in Addlestone where she has flu/Covid jabs! And she is becoming braver. I nearly made it out of the hospital car park within 20 minutes last time. That would be a record – and it also means free parking!
As Jasmine became unwell at Christmas time we are taken right back to that scary time from about the beginning of December. It’s a bit of an emotional rollercoaster and literally everything sets me off; from watching children in the nativity, putting the tree up, silly jumpers, the twinkly lights, warm hugs with family, all of it!
Whilst I may cry a fair bit, I’m not sad, we are filled with gratitude. We as a family will be forever grateful to our daughter’s donor and their family, for the NHS and all the many amazing people who cared and continue to care for us. We are grateful to our family and friends for their extraordinary kindness, compassion and prayers. I can’t tell you how that helped propel us through the darkest bit, and they continue to support us when we have the odd wobble now and then. My advice to anyone experiencing similar is to lean on anyone who offers you help. We have found getting to know other families who have experienced similar has really helped us. And lastly, keep asking questions of the professionals – they’re extraordinarily knowledgeable!
It was a scary time, but my lasting memory is of a determined young girl who showed some impressive and inspiring grit. We are incredibly proud of her and her older brothers, and how they have come through it.
Merry Christmas and a Happy New Year to you all!
