Support FAQs

My daughter has started going to parties and all her friends are drinking. She tells me she isn’t but I worry her friends pressure her. Should she be drinking at all or will her liver be ok if she just has a few occasionally?

Alcohol can cause liver damage to anyone whether they have a liver condition or not.  Because your daughter has a liver condition, then she already has some degree of liver damage.  In an ideal world, anyone with a liver disease wouldn’t drink alcohol because of the difficulty that their already damaged liver may have in trying to get rid of it from their body and the cumulative detrimental effect that it could have in causing further liver damage.

The worst kind of consumption of alcohol in terms of its negative effect on physical and emotional health is the type that is often called ‘binge drinking.’ Binge drinking is difficult to define but it could be used to describe any form of drinking alcohol that exceeds the Department of Health guidelines of no more than 3-4 units per day for a man or 2-3 units per day for a woman.

Trust is an important part of a relationship and if you can, try and ensure you keep the door open so she feels she is able to discuss this with you and you can help as is needed at the time. 

You may find it helpful to talk about this and other life style issues with your hospital team.  They will be able to help give advice and support which is relevant to her and to you.  .

To download a copy of CLDF’s Taking your Liver into Adulthood, Alcohol leaflet click here or to talk to the families team click here.

Apart from the normal risks relating to tattoos, is my daughter any more at risk because they have auto-immune and sclerosing cholangitis?

If you can, we would advise that you encourage your daughter to discuss her plans with her hospital team as she should ensure, as all people with a liver disease should ensure, that her blood clotting and platelet count are normal beforehand. This can be checked on your routine blood tests at either a GP or hospital appointment.  Also, encourage her to go to a licensed tattoo premises.

To download a copy of CLDF’s Taking your Liver into Adulthood, Tattoos and Piercings leaflet click here or to talk to the families team click here.

My child is about to start nursery. I am really worried about handing the care over to the staff as he bruises easily; he has a compromised immune system so picks up viruses easily. How can I handle this so I don’t come over like a paranoid mother?

First of all make sure you have all the facts and information about your child’s illness from your specialist nurse so you’re totally clear about things,

Your child’s nursery may (and only may) have a nurse or someone in charge of medical matters.  If so, seek him or her out and try and arrange an appointment to meet them to talk about your child, their liver condition, treatments, any care or dietary plans or needs and what they need to look out for. 

CLDF has a schools and Nursery pack that is available for you to order which should help explain things to the nursery. 

Try and develop trust with the staff and keep communication channels open so you both feel confident talking to each other no matter how small or large an issue it is. 

Click here to register with E Talk to chat with other parents/carers.

My daughter has spent the first year of her life in hospital. I have never left her side. My husband says that I need to relax a bit now we are home as I won’t leave her with anyone. How can I learn to let go a bit?

Letting go is not always as easy as it sounds, especially when most of your baby’s first year has been in hospital.  Being at home means you can now do things that you couldn’t when your baby was in hospital.  It may be that your family and friends weren’t able to visit because of visiting times, or distance to the hospital. With this in mind you could invite a friend over and have a couple of hours at home, that way you would still be around ‘just in case’. It’s important to remember to take care of yourself.  To order your copy of CLDF’s Look after Yourself – You Matter leaflet click here.

My new baby niece has just been diagnosed with biliary atresia. None of the family has seen her yet as she is still in hospital. How can I support them as I feel really helpless?

A diagnosis of liver disease in a relatives’ child is a shock for everyone.  It’s natural that you want to help but can be hard to know how. 

CLDF has a friends and relative’s pack which has a range of information on childhood liver disease, our work and a leaflet from which you can order medical and other information, free of charge.  There’s also a leaflet giving practical tips on helping. 

Don’t underestimate how helpful it is to have someone bring round a meal, “feed” the freezer, mow the lawn or run the vacuum over the floor, rather than sit and drink coffee.  Do that once you’ve done a great job! Click here to order your pack. 

Fundraising can also be a very tangible way to show your support.  You could mobilise work or other friends to do something to raise money so we can continue to support families. There are ideas in your pack or click here to contact the fundraising team.  CLDF's families’ team are here for you or visit E- Talk to talk to other families.

My granddaughter has been in and out of hospital for liver investigations. I’m worrying about her but also my daughter as she looks exhausted and I know she isn’t taking care of herself. How can I be there for her?

It is understandable worrying about your daughter’s health, being in and out of hospital can be physically and emotionally tiring. Your daughter is probably worried about your grand daughter, in which case she may not be concerned with taking care of herself. There are ways in which you can offer practical help that may ease the pressure, CLDF Friends and Relatives pack has some suggestions click here to order a pack. It can be something as easy as going along or driving your daughter to the hospital for appointments.

Our son suddenly had acute liver failure and was transplanted - all in the space of a few weeks. My husband has completely shut off and won’t talk to me about how he’s feeling. I just keep crying and want to talk to him. I feel really angry at him, what shall I do to get him to open up?

When a child becomes ill, parents may handle it quite differently, in their own individual way.  It is easy to feel and think that the only way to handle and process things is your way, so try and be patient and accepting that there are different ways to handle things.  It is easy to interpret silence as “not caring” or “not feeling” but someone can be caring and feeling very deeply but not just want or be able to talk about it.  Giving space, time and respect for each other and your own feelings and thoughts is important.  It is hard though faced with a situation like yours.  CLDF has a leaflet which may help. Living with Childhood Liver Disease, Some Thoughts and Ideas for Parents. Click here.

Having to deal with a sudden diagnosis and treatment in a very short time is alot of information to take in.  It is really helpful if you write down your questions and keep talking to your transplant team so you can get all the help and support you need. 

CLDF offers a leaflet on Liver Transplantation which may be helpful to give to family and friends to explain what has happened and what will happen in the future.  Click here.

With CLDF’s online forum E Talk, you can read other parents personal experiences, it can sometimes help to read about families in similar situations.