Endoscopy and study - thoughts so far

I have been doing a great deal of thinking on the subject of the endoscopy and study. No conclusions yet, but lots of random thoughts that need organising.

An endoscopy is being recommended for Hannah because she has portal hypertension. Portal hypertension is elevated blood pressure in the portal vein which carries blood between the liver and the digestive system. In Hannah's case this is caused by restricted blood flow through the liver because it is damaged. Varices form when the blood tries to find other routes back to the heart. It travels through other veins and these can become overloaded with blood meaning they can burst. A variceal bleed is a life threatening medical emergency. Hannah has been diagnosed with portal hypertension because her liver and spleen are both enlarged. At this stage it is considered to be mild, based on how much her spleen is enlarged.

The thought of a bleed from portal hypertension has been my number one fear since Hannah was diagnosed. A decline towards transplant does not happen overnight, and there would be time to take stock and adjust. The thought of finding Hannah covered in her own blood is the stuff of nightmares. I wish someone had told me in the early days that it is uncommon for varices to develop in the first 18 months of life if the Kasai is working and the liver is functioning. My anxiety levels would have at least halved.

My mind has gone to many dark places in the last 2 years or so on the subject of varices and bleeding. For children with BA and successful Kasai a major bleed can come completely out of the blue. It's often made me wish I can see what was going on inside, to know whether I can put that fear to rest for now. I would have thought I would have jumped at the chance of the endoscopy to find out for sure. Now I am having some doubts.

One of the thoughts I am having is that I don't want Hannah to go through an invasive medical procedure solely for my peace (or anxiety!) of mind. While her doctor is recommending it, the ultimate decision as to whether to go ahead lies with us. I really need to think through the possible outcomes of the endoscopy and whether having it done would be beneficial to Hannah.

If treating any risky varices was the point of the endoscopy, I would have no doubts whatsoever. The problem I am having is that a) if Hannah is not part of the study any varices would not be treated anyway b) if she is part of the study she only stands a 50% chance of being selected for treatment. Perhaps this would be a good point to go into the current protocols and the details of the study.

Currently here in the UK children with varices are not usually treated unless they have a bleed. There are some exceptions to this (such as those based long distances from the liver centre). The treatment is to put a rubber band around the varices which is done by endoscopy. There are drugs to treat portal hypertension but they tend not to work so well in children as in adults.

It has already been established through trials that in adults it is desirable to treat varices before a bleed. At the moment it is unclear whether the same is true for children. This is what the study is seeking to establish.

The way the study will work is that when children are recommended for routine endoscopy they will be invited to take part. To ensure there is no bias the decision to take part is made before the routine endoscopy is carried out. Children are eligible to take part in the study if they are found to have large varices which are at risk of bleeding. They are then divided randomly into two groups; those who will have banding treatment and those who will not. For those who have the treatment, the first banding will be carried out immediately, and further banding will take place until the varices are all gone. There will then be further follow up and banding if necessary for the rest of the two years of the study. The other group will not have any varices banded unless they have a bleed. They will also be followed for two years. One of the things I need to know is what is the plan after the two years are up? If that is not included in the information pack from the hospital then I will definitely ask.

There are so many different scenarios to consider. In some of them the endoscopy seems a no-brainer, in others it seems pointless.

To start with, I am finding it hard to justify going through with if we are not going to agree to be involved in the study. I see two end results - the first, and most likely, being that she does not have any large varices, in which case the endoscopy has served no purpose other than to give peace of mind to the adults involved in her care (and of course me!) The second would be that she was found to have large varices at risk of bleeding. The current protocol means the banding procedure would not be available, at least in the short term, so that would mean spending the next however long in a state of perpetual anxiety about a bleed. I suppose there are some benefits to having knowledge of what is going on, whether or not it is going to be acted on, but that needs to be weighed up against putting Hannah through an invasive procedure.

If we agree to allow Hannah to take part in the study, then there are three end results. Again the most likely is that she is found not to have large varices, and nothing much has been gained apart from peace of mind (not that I am understating how valuable that can be, just weighing it up). If she does have threatening varices, then there is a 50/50 chance that she will not receive any treatment, so again we are back to the major bleed anxiety situation. If she does get picked for the treatment group, then it involves a lot of endoscopies and a medical way of life that we have thankfully become unaccustomed to.

Then, on the other hand, there is the big part of me that says I would move heaven and earth to prevent any possibility of Hannah having a bleed. If that involves some disruption and taking some chances, well, maybe it is worth it. If I were to do nothing, and she had a major bleed, would I forgive myself? I need to do a lot of thinking and praying about this, and Andy and I need to spend some time in discussion.

I know an endoscopy is, when all is said and done, a minor procedure. But I know every parent out there would agree with me in saying that putting your child through any medical procedure is a decision not to be taken lightly.