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.
Freya, who is 18, admits that a scar can alter perception of your body, particularly as teenage girls really want to be the same as everyone else:
“It can be difficult growing up with the normal pressures of a teen girl and body image, and a scar on top of that is really hard sometimes! Yes, there’s always fear of judgement, but in reality, people tend to be kind and don’t care at all! I have told a few people, and they are always reassuring because a scar makes you unique and truly isn’t as noticeable as you think.”
Catherine who is now 25, feels that her transplant scar reflects well on the skills of her surgeon:
“It’s faded over time to a white line and is well proportioned. The surgeon did a good job. I was never embarrassed by my scar and people think it is cool.”
Twenty-four-year-old Alex* brilliantly sums up how attitudes to scars can change over time:
“I was born with biliary atresia and had a Kasai as a baby, so I have never really known what it’s like to not have a scar. However, I’ve still had to learn to love it and get used to it and now that I am awaiting transplant, get used to the thought of it changing. When I was really young, I assumed everyone had a scar on their stomachs and I was never afraid to show it off. However, the older I got and when I began to realise, I was different to everyone else I would hide it a lot more. I would hide in corners to get changed for PE and attempted every trick in the book to try and disguise it even though I knew that wouldn’t work.
“It took me a long time to realise that people aren’t looking at it and if they are most of the time it’s just human curiosity getting the better of them! But what helped me most was being told that my scar shows what I have already fought through, and came out the other end of stronger. Which is true! I still have bad days where I don’t like my scar being there, but have found ways to make it feel more a part of my personality and who I am. I even decorated it with a little tattoo to give doctors (and me) a giggle during scans, check-ups and at some point, my transplant.
“It is hard to love your scar, and it’s okay not to get along with it every day. But you always have to remember that it shows exactly what you’ve fought through and is a reminder to be proud of yourself!”
Leo, 17, agrees with this sentiment:
When I was changing for PE during primary and early secondary school years, I would be really self-conscious about my scar and worry that people would ask why I have it. Although the answer was simple to me, it would take a lot of explaining for someone who didn’t understand, and I didn’t always want to do that. Now that I am awaiting a transplant, I’m very nervous about the new scar that I will have, but I believe I’ll learn to be proud of it, just as I am of this one.”
Jake who is 18 has two scars and his mum, Kerry, always worried that people might think that one of them was a result of violence!
“Following surgery when he was 15, Jake got two large scars – one horizontal across his abdomen and a vertical scar down his neck. I’ll be honest I used to really worry about the scar on his neck, you can’t hide it, and I used to think people wouldn’t realise it was surgical and get the wrong impression of Jake! I now really appreciate it when someone asks ‘What happened to your neck?’ and he proudly explains that he had the jugular taken and used inside his liver to bypass a blockage. He was over 10 hours in surgery. I feel that his scars tell a story, and they are part of him. They show what he went through and survived. “
Dan* who is 17, also feels that scars tell a story: “For me it symbolises something important and life changing as it represents bad times turned into good times and my scars remind me of that moment.”
Jemma Day, clinical psychologist at Kings College Hospital’s 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! Having a neutral approach to their bodies in general (focussing on what the body does rather than what it looks like) supports adjustment to their scar and any other physical changes that might come with a liver condition and treatment. 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.
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. Young people in our clinic tell us that lots of different things impact how they feel about their scar, but also that how they feel can change over time as well.
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.
Self esteem
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, being curious about what this means about the other person who is choosing to say something unkind about another person, rather than on their scar/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.
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 families@childliverdisease.org.
*Names have been changed.
