Many children who have liver disease live with a scar, either from Kasai surgery or a liver transplant. Young people’s attitudes to their scars can vary enormously and affect how they feel about themselves and their liver condition.
Seven year- old Molly* received a living related transplant from her uncle when she was six months old and is very matter of fact about her scar.
“We explained to Molly why she has a scar as soon as she was old enough to understand,” says mum, Liz*. “We wanted her and her sister to know why she has these hospital appointments, so we have always been very open and answered all her questions. Obviously, she has no memory of the transplant – it’s just a story she likes to hear.
“Her scar isn’t something she particularly talks about, but she’s not embarrassed about it either. I think it helps that my brother also has a scar from his own surgery. It’s a special connection the two of them have and I it reinforces the point we have made that a scar is just a scar. It doesn’t mean you’re ill or can’t do stuff.”
Charles, nine had his liver transplant at six months.
“I don’t remember when he started asking about it but we have always been open in talking to him about it and telling him in an age appropriate way about his illness and his new liver,” says mum, Sophie.
“As he has got older, he has asked more detail about the how and why of his transplant but he has never been self-conscious about his scar, doesn’t mind his friends seeing it and most of the time doesn’t even notice it. He has never been laughed at or made to feel different – he even did a kind of show and tell at school about it.
“Charles says his scar makes him happy and calm when he looks at it as well as curious because he doesn’t remember being ill. We definitely feel a great sense of gratitude when we see it, knowing how close we came to losing him – his scar reminds us how lucky we are to have him!
Dan*, who is 16, had his transplant when he was just 11 weeks old and although he is now well and likes to be active, he is still not comfortable about his scar:
“I have a passion for swimming but whenever I go into a swimming pool, I feel that everyone is staring at me,” he says. “I don’t feel comfortable – I feel embarrassed.”
Lauren*, who is 17 says her attitude to her scar has changed over the years:
“I have always had a scar from my Kasai and when I was little, I used to forget it was there most of the time. If anyone asked me about it, I would tell them that I had a poorly liver and the doctors had made it a little bit better
“A couple years before my transplant, around the age of 13, I became really self-conscious about my scar and I started to hate it. It began to really bother me as I felt so alone because I wasn’t ever around anyone else who had scars. Since my transplant, even though I now have a bigger scar, I actually love it.
It makes me different from everyone else. I have spoken to other young people who have had liver transplants and I like knowing that we all have them for the same reason. I like to think that my scars represent the battle that I have been through with liver disease and to me it shows that I was stronger than what was trying to beat me.”
Captions: Young people ‘s attitudes to their scars can vary
Jemma Day, clinical psychologist at Kings College Hospital’s liver transition service has some advice for parents.
With young children, it’s good to talk about their scar as you do anything else that belongs to them. This shows that you are comfortable with it and gives them the message that it’s fine to talk about it and be proud of it.
Give clear and honest information right from the beginning, that fits with their level of understanding. Explain that the operation was to help them get better, using simple words they understand. More questions will probably follow, but just answer each one in turn, not hiding things but not necessarily offering information that they haven’t asked for. If you don’t know the answer to a question, tell them that you are not sure, and you can ask their medical team about it together at their next appointment.
As your child gets older, their ability to understand medical information will develop, so more than one conversation about their transplant will probably be needed. Ask your child’s hospital team for support with this if you feel you can’t answer their questions. The Cbeebies website also has some resources for helping parents talk to their children about hospitals https://www.bbc.co.uk/cbeebies/grownups/get-well-soon-hospital.
Children’s feelings about their scar seem to be as unique as they are; some seem rather indifferent to it, some don’t like the shape or look, and others are immensely proud! Again, having a positive approach to their bodies in general supports adjustment to their scar and any other physical changes that might come with a liver condition and treatment.
There’s some research evidence from children with other types of visible difference that they feel more confident if their difference has been present from birth rather than later in childhood or adolescence, but we don’t know if this is also the case for young people with liver transplants. One of the reasons suggested for this is that children and their peers get used to the scar before appearance becomes more important in adolescence.
Sometimes the experience of surgery and memories of being in hospital can impact on how children feel about their scar, particularly if the admission or recovery process was complicated or challenging. Talking to your child about their scar is not always easy; especially given the process of liver transplant is often very difficult for parents as well. Sometimes your own feelings can get in the way and make it harder for you to talk openly and honestly with your child. If this is difficult for you, speak to your medical team or contact the CLDF support team.
There is not much research into self-esteem in young people with liver transplants. The results of a small study we did in our transition clinics at King’s did indicate that body image was a bit worse for young people with liver transplants than their healthy peers. However, this was also true for young people with other liver conditions, suggesting that poorer body image is not simply explained by the scar alone. In general, body confidence seems to be lower in young people with chronic conditions, regardless of whether there are any obvious cosmetic implications or not.
Confidence can take a big knock in adolescence, especially when it comes to appearance and looking different to your friends. It typically varies depending on the situation too: for example, a young person might feel confident in their ability to do well in exams, but might feel less confident about socialising with other teenagers. People are not born with high or low self-esteem: it develops over time and can fluctuate. Body image also tends to be related to how much emphasis is placed on looks and appearance within their social world. On top of all this, if a young person has difficult experiences, this can affect their self-esteem and their relationship with their condition.
It is very normal for young people (and adults!) to compare themselves with others but part of building confidence is about recognizing their own qualities, skills and talents too. We can’t change whether we have a condition or a scar, but there are things we can do to change how we feel about it. Young people might need some support with this.
- If a great deal of a teenager’s self-worth is pinned on how they look, then a scar or perceived ‘imperfection’ can affect their confidence much more than if they value talents such as kindness, friendship and humour over their appearance. Talking to your child about things you admire about them can give some balance to this.
- If a young person does experience a negative reaction towards their scar, thinking that this reflects badly on the other person rather than on their scar or themselves can make the situation feel easier to manage. You can gently encourage this mindset at home by minimising how much you talk about other people’s bodies. Sometimes even making positive comments about how celebrities look can give an inflated sense of how important appearance is. Keep conversations about bodies to explaining how they work and encourage the idea that their body is an instrument rather than simply something to be looked at.
- Although it is tempting to immediately reassure your teenager that their scar looks fine or beautiful, it’s also helpful to acknowledge if they don’t feel this way and let them know it is okay to talk about it if they want to.
For guidance on supporting your child’s self-esteem you’ll find some useful information on the Changing Faces website. Or contact the CLDF Support Team at email@example.com.
*Names have been changed.