The story of Millie
Millie’s Story
Written by Millie on 30/06/2015 14:10
My name is Millie, I am currently 13 years old, I was born on the 16th February 2002 and this is my story of living with biliary atresia.
I came into this world jaundiced like many other babies; however a couple of weeks after my parents took me home the jaundice had not gone away. I was taken to hospital where I was put under an ultra violet light in the hope that this would cure the jaundice. It was at this time that a passing doctor who was temporarily working at Guilford but was in fact from King’s College Hospital took an interest in me and suggested that I should have liver function tests as the ultra violet light appeared to be having little effect.
The test results and subsequent scans showed abnormal liver functions and I was immediately transferred up to King’s. Further tests revealed that I had the liver condition biliary atresia. At 6 weeks old, I underwent the Kasai operation in order to improve my condition and to buy me some time. However, this operation carried many risks and has left me with a scar across the middle of my stomach. As a result of the operation I developed portal hypertension which became apparent in the following months.
Although the operation was not 100% successful the surgeons were confident that my liver would function adequately to see me into my teenage years. The fact that I have had to take up to 12 medicines a day and have an enlarged stomach was a small price to pay. Since I was little I have also been itchy especially on my arms, hands, legs and feet, which is controlled with medication.
Not long after starting primary school it was noticed that I was jaundiced and a couple of months later I was up at King’s for a 3-day transplant assessment after they found that my blood test was also abnormal. However after taking some antibiotics I was well again and was no longer considered to need a liver transplant. My check- up appointments where I have ultrasounds, blood tests and talks with different consultants have always been 6 months apart as my condition is normally stable.
Then when I was about 9 years old, once again I became jaundiced and this was the time that I realised that I was different to most children. I used to get called names because of the colour that I was and I didn’t really ever know what to say to them because how were they meant to understand. I was again sent up to King’s for a transplant assessment. On the last day I was put on the transplant list and it was explained clearly to me what would happen when I got the call saying they had found a match. But when they had done the final set of blood tests my liver function levels were back to normal and I was taken off the list.
I have recently returned home from my fourth operation to band the varacies which is part of the treatment for my portal hypertension condition. It was first recognised this operation was necessary in 2012 and I was sent up for my first procedure soon after.
Starting secondary school was a big step for me in my life and like everyone else in the country I was nervous but excited at the same time. I made new friends and no one saw me as being any different to them as no one knew about my condition. My enlarged stomach had shrunk as I had grown and I was not jaundiced, however getting changed for PE was the worst part of the week as I am very conscious of my scar and didn’t want anyone to see.
Everything was going well until I went for one of my check up appointments and they said that I would have to now be excluded from most sports especially contact, horse riding and trampolining. My next PE lesson came round quickly and I sat on the side watching. This is when all the questioning started. After that lesson I had many children come and ask me why I was no longer joining in and I was unsure what to say. It was at this time that I knew I would have to open up to people and tell them about my condition and surprisingly they listened and carried on like before.
Looking to the future I will not like other teens be able to drink alcohol or smoke as this could cause further damage to my liver. However, this won’t stop me from going out and going to parties. Just because you can’t drink it doesn’t necessarily mean you can’t still have fun.
My condition is a part of me, a part that I will never live without. It makes me who I am and I believe that it has made me a stronger person. Accepting that you have a liver condition makes it so much easier to live with. If you have a family as supportive as mine you will always get through it and CLDF will always be there if you need them.
Advice: never be ashamed of your condition and always stay positive.
Follow my Facebook page @millies fight with biliary Atresia