Cherish every minute
Childhood liver disease is rare and therefore often difficult to diagnose. Here Samantha shares her experience.
I am the mother of Logan, a lovely 14 year old lad, who at the age of three was displaying signs that something was not quite right with his general health.
Being a midwife and having two other children ( a 15 year old son and a two year old daughter) I had medical knowledge and parental experience in knowing something was amiss.
Logan , who is now 14 years old, was having loads of colds, flu’s and was catching every childhood illness there was. His vaccines were delayed at times due to him having another period of ill health.
I took him to the GP at the age of 3 and asked if he would please refer him as I knew something wasn’t right. The GP said he looked fit and well “he doesn’t look anaemic or anything”.
He did refer him, however, as he knew my occupation and also knew that I wouldn’t have been there if I wasn’t worried.
Then my son was seen by the paediatric team I worked with. They did a physical examination and took bloods. I could tell by my colleagues faces that not all was well.
I was told my son had a very enlarged spleen and his bloods had come back quite deranged. They had ordered further bloods including a blood film. They were suspecting all sorts of conditions at this time.
We had an ultrasound arranged which revealed that his liver was slightly enlarged and his spleen was bigger than an adult males’ despite the fact he was only three years old!
The medical team then requested a bone marrow biopsy which came back ok. Still scratching their heads, they continued to monitor him every six months. There was no change in his condition other than an abnormal INR and full blood count and his liver enzymes were going up and down.
Just to explain the INR or prothrombin time tells how the liver is functioning for blood clotting factors. The liver makes and breaks down proteins which in turn help produce clotting factors that stop us bleeding when injured. People with liver problems have difficulty with this. Logan’s spleen is also enlarged so it will also impact the problem by overworking and killing blood cells not ready to die yet. So he is short of blood cells due to his spleen breaking them down and also reduced clotting factors due to poor liver function. A full blood count looks at your red blood cells, white blood cells and platelets. In Logan’s case his blood counts were all low. This made him anaemic, at risk of bleeding and made it difficult for him to fight infections. The liver function tests were not too out of wack but again showed that the liver was not functioning at its best.
This situation continued for several years. We lived without a diagnosis for so long. We knew that there may be something underlying yet to show up, but we still had to deal with what we did know. Then when Logan was seven years old, he had an ultrasound in a different hospital. They contacted us at home a few hours later to tell us that there was an abnormal mass in Logan’s liver.
To say we were in a panic is an understatement.
We were told that there was an MRI arranged and that we would know more the following week.
The result from the MRI was that Logan had a condition called portal hypertension. He had a blockage in his portal vein that was causing back flow to the liver and spleen. They had said the blockage was caused by a small benign tumour.
At first we were relieved that we knew what was wrong, but then the flood happened when we then discovered what that meant for Logan.
I cannot begin to tell you what a horrible condition liver disease is. It is unpredictable and it has the most horrendous implications.
My little man is now athletic built and 5 foot 10. He has had the condition since he was very small so he doesn’t know any different. He’s used to hospitals. He gets tired. He bruises and bleeds out. We have two – three nosebleeds a month. He has to have a scope every year to make sure his oesophogeal varices are behaving and not likely to rupture. We keep an eye on his spleen size and hope he doesn’t have a rupture there and keep an eye on his liver bloods to make sure his liver isn’t failing.
We were told by the liver specialist in Leeds that we have to hope his body compensates as he grows. Recently he has been diagnosed with gallstones.
It is an endless process of worry, balanced with trying to keep everything as normal as you can when inside your heart is breaking for him.
I retired from my job early, due to stress and I now concentrate on my children. It has got easier in some ways as he has got older but more worrying in other ways.
All we can do is pray that we do the best by them and that every moment we have with them is a blessing.
Cherish every minute.
