The story of one little boy’s battle with liver disease early in his life
My name is Megan and when I was 18 years old I gave birth to a bouncing baby boy on the 12th of April 2010. My pregnancy and the birth were perfectly normal so I was discharged from hospital after two days, with a follow-up from the midwife a few days later.
When the midwife arrived we discussed Kody’s weight and skin colour, as he wasn’t gaining very much and was slightly jaundiced. Things never improved and the advice I was given was to keep him in the sun and it would go away in time. When Kody was 7 weeks old his stools went very pale (almost white) and also very frequent. I rang the doctor on call as this was a Saturday. I gave all his symptoms and was told that it sounded as if Kody was lactose-intolerant. I was advised to take him to the GP first thing on Monday morning with a stool sample.
So, on the Monday morning off I went. On arrival the doctor asked me to give all Kody’s details. After one look at him he said, “I don’t mean to worry you but you need to get Kody straight to hospital”. What was going on in my head at that moment in time is indescribable! So that’s where the journey started – the long, bumpy one.
When we arrived at our local hospital we were taken straight to the children’s ward. They took blood samples straight away. About an hour later the results were back and they were able to tell me that there was something abnormal with his liver but they couldn’t pinpoint what and more tests would need to be preformed.
So over the next eleven days every test you can possibly think of was performed from X-rays, scans to isotope scans – so much for such a little boy but a very strong little boy. On the 11th day a team of doctors crammed into the side room and told me that Kody had to be flown to Birmingham Children’s Hospital to get a life saving operation as they thought Kody had biliary atresia.
So that morning we were on a plane to England – scary I know. When we got there Kody was changed for theatre and everything was good to go until yet again a swarm of doctors gathered in the room to tell me that they had got it wrong and Kody actually had a liver disease called Alpha-1 Antitrypsin deficiency. From that moment on I strangely felt relief. I knew it wasn’t going to be easy but I knew that he was a fighter. I was given lots of helpful information, met so many lovely people and after three days Kody was discharged on five different medicines and new formula milk.
With regular check- ups at our local hospital and Birmingham once a month, Kody’s weight began to dip. After trying
extra calories in his milk, he still struggled to put on weight. When he was 16 weeks old, his consultant back at BCH, Dr.Pat McKiernan, decided it would be best if Kody had a NG tube fitted to help him fatten up. That was another week’s stay over the water, but thanks to Ronald McDonald House they make you feel right at home when times were hard.
At 20 months old, Kody had his NG Tube removed and things have gone well for him in the following months. We’ve had a few spells in hospital, appointments coming out of my ears, liver function tests that go up and down like yoyos – but through it all he has developed into a boisterous little boy who he has never once complained.
Now, almost 4, Kody is a proud brother to Leo.