Psychological aspects of living with bladder exstrophy/epispadias

Early Years

Some parents find out during pregnancy that their unborn child has a problem with their bladder, whilst for others, it comes as a complete surprise when their baby is born. How families react at these times depends on many things – including how much information they have about the condition and the support they receive from healthcare professionals, family members and friends. Certainly, most of the challenges at this stage are for parents and there can be many different competing emotions to deal with. The developmental literature on body image documents that it is at approximately the end of the second year that children develop a sense of body image, so young children tend to be very accepting of their bodies. In the early years therefore it is parents and other family members who are coming to terms with how their new baby looks. Reactions of healthcare professionals at the birth of the child can give an idea of how others may react and a sense of what the future may hold, and information given at this time can play an important role in addressing any worries. An important process for some families can be grieving the loss of the expected baby – the one that had it’s tummy and urinary system intact. Other challenges of this stage can be more practical: coping with the child’s initial treatment/surgery, learning ways of coping with and juggling hospitals, doctors, nurses, appointments, other children, family, home, work…, working out who to tell what about the condition.  Starting nursery and school can present new challenges. The child may find themselves surrounded by peers who are not in nappies, perhaps needing some extra help around toileting, and certainly needing some understanding from teachers/carers. There are many things that parents can be doing at this stage to help their children to grow up feeling beautiful, special and proud of who they are:

• telling them how beautiful/gorgeous/special they are each time they smile, overcome a challenge, learn something new…
• pointing out their strengths and helping them to grow and flourish, finding activities that they enjoy e.g. football, drawing, playing, singing, dancing, swimming…
• explaining that everyone is different – some people use glasses, hearing aids, wheelchairs etc. because of the way they were made, and helping children to see all the things that they have in common with other people – the ways in which they are the same.
• listening to them, taking their concerns seriously and helping them find ways to deal with them.

When children ask about their scars/belly button/penis it helps to give them explanations they can understand (your bladder was broken when you were born. This is where the doctors mended it.). Help them also to find answers to other people’s questions – they will learn from hearing the answers that you give. Involve children in deciding who/how/what to tell when they start school. Children often have clear ideas about this which parents may/may not agree with. But they can be helped to think through the pros and cons of different courses of action in order to find a solution that suits all involved. Above all, enjoy life! Live life to the full and encourage your child to do the same. Don’t let bladder exstrophy be the focus of you or your child’s life. And look after yourselves as parents/carers. There are some tough moments, but there also many many good times – your child’s first smile… first steps… first words… It can help to talk to people you are close to, do things that are important for you as a person (sports, hobbies, friends). We all need help and support at times so don’t be afraid to ask your medical team or talk to one of our contacts on this website if you have any questions or concerns.

Middle Childhood

The school-age child has a much clearer conception of body image and is aware of cultural standards of appearance. They will notice visible differences and will start to question why their body is different from their brother/sister/friend. Also around this time, other children are likely to notice differences and perhaps comment on them – although children are often very accepting of differences in children they have grown up with. Other challenges for children and families at this stage can include making decisions about and going through surgery to gain urinary control. Children are also growing in understanding, independence and sense of what they want and this can bring its own challenges. Plus, changing schools and peer groups is likely to be on the horizon as children approach secondary school age. At this stage, feeling good is something both children and parents can work towards. Children often have questions about how their bodies may be different from their peers both in form and function, and they want to know what the surgeons can do to put these things right. Sometimes there are surgeries that can help (e.g. gaining urinary control, creating a belly button) and sometimes there aren’t, and the task for the child is to come to accept their body as it is. The groundwork put in earlier (in terms of building children’s self-esteem through praising them and building their confidence) can carry children through this stage feeling good. Changing school and encountering a new peer group who are not used to ways in which you may be different can be a wobbly time. Encouraging hobbies and out of school activities is a really good confidence-builder at this stage. Particularly physical activities (sport, dance…) as feeling good about what your body can achieve in this respect has a positive impact on our body image and self-esteem. By this stage, children will have some experience of the pros (people who understand…) and the cons (teasing…) of telling others about their condition, and often have clear ideas about how to handle situations like changing schools. Working out a plan of how to manage this as a family, and together with the school can be helpful. Also during this stage, children may have to learn new ways of coping with going to the toilet which may involve sticking to new regimes, and perhaps one or two battles. Children may become more wary of  getting changed for PE or swimming, going to friend’s houses – perhaps even staying over and may need help dealing with other people’s questions and perhaps even some teasing. Achieving a balance between encouraging normality and providing appropriate support for children in these situations is the challenge for parents/carers. Any one of these challenges can get on top of a child (and a family) from time to time. Feeling down about how you wee, or how your body looks can perhaps be triggered by some teasing. It may also happen as part of the normal process of growing up and adjusting to your body. Often children will come to parents at these times and together you can work out how to tackle the problem – and sometimes parents have to steel themselves to let their child go out and tackle some of these situations by themselves. But sometimes a problem can get the better of everyone and it can take a third party with some extra understanding to help everyone get back to feeling on top of things.

Adolescence

Adolesence

Adolescence is a time when it can be hard to work out exactly what a young person is thinking and feeling, and therefore how best to help them. But an excellent study by Wilson, Christie and Woodhouse (2004) sheds some light on this. They interviewed 16 young people with bladder exstrophy aged between 16 and 21 years and gave them some measures of psychological well-being to complete. They found that body image and sexual activity was an important area of concern for all the young people, although the level of concern varied. For both boys and girls the scars on the lower abdomen and the absence of a belly button were important issues (as well as genital appearance) – particularly if attention had not been paid to the distribution of pubic hair-bearing skin at the time of the initial surgery. For girls there was a particular issue with clothes e.g. the current fashion for crop tops which expose the lower abdominal area. Worries about continence could also influence the choice of clothing e.g. some wore 2 pairs of underpants. For boys, the main problem came with the need to change in communal changing rooms and the potential to expose what they felt was the most vulnerable area of the body. Steps to try and avoid this happening often only created the new anxiety of appearing to be different. All the participants identified themselves as heterosexual and few seemed to be virgins. However, all expressed worries about their sexual function – they talked about feeling the need to tell their partners about exstrophy and yet were afraid of the reactions they might get and being rejected. Sexual activity tended to take place within an established, trusting relationship. ‘One-night stands’ were not often reported, but sexual experimentation to find mutually satisfying positions was talked about quite a bit. Much emotional support was often needed to overcome the hurdle of the first sexual experience, but once this had happened the young people seemed to establish firm and long-lasting relationships. Many participants had had partners who were the children of doctors, nurses and others in the caring professions. They had a positive expectation of future marriage and conception of children, although most acknowledged the possibility of fertility problems. Telling was a subject that dominated a large part of the interviews: who should be told what and when. It appeared to be crucial to the well-being of all and views were strongly held. On the negative side, the young people wished to preserve their privacy and were worried that if they told people about exstrophy they would be rejected. They felt that telling would provoke a bad reaction, especially pity or revulsion, that they might be treated differently, and that confidentiality would not be maintained. The younger ones feared bullying and the older ones that there would be a negative effect on their job prospects. On the positive side, some felt that telling might increase understanding of, and support for, their problems. Some felt that respect, especially for their courage, might be increased. They knew that some people had to be told. First amongst these was a potential sexual partner, although that did not always make it easier for them to tell. Teachers and employers were also to be told. Telling was seen as a strategy with a clear goal and absolutely under the control of the young person. These adolescents did not want anyone to be told without their express consent – a sense that probably develops earlier than parents might think. Individuals with exstrophy as a group have long been recognised as resilient, uncomplaining, hard working and making the best of their situation. The data from this study confirmed this and suggested that these features are part of a complex coping strategy. There was an overwhelming wish to be normal; although there were concerns about particular things (such as weeing naturally), they saw themselves as normal individuals with a specific difficulty and wished to be treated as such. They wished support measure to emphasise normality. Unfortunately, some support actually made things worse by emphasising differences, e.g. the provision of separate toilet facilities/ prohibition from school trips. The young people in the study showed an ambivalent attitude to parents (although perhaps no more than is seen with other teenagers!). Parents were needed for practical support, especially to combat bullying, and for open discussions. On the other hand, young people wished to be independent from parents (who were often seen as overprotective). They wanted to gain more knowledge and to make their own decisions. Many were concerned about the impact of exstrophy on the rest of the family. Leading on from this was a wish to have a professional from whom knowledge could be obtained and with whom decisions could be made independently of the parents. The young people also developed independent coping strategies. They all emphasised the need to ‘get on with it’ and developed practical approaches such as appropriate clothing, a belt with pockets to store catheters and jokes to deflect questions about their condition. All the young people had developed remarkably similar strategies for dealing with bullying – fight back, enlist the help of peers or family, and find ways to explain the nature of their condition. Some covered up their problems by joking or by rebellion against medical and parental authority. Ultimately, most identified positive aspects of their situation. A combination of the nature of their care and their apparent character led them to early mixing with adults, with whom they felt confident. Maturity, self-sufficiency and independence came early. They were able to cope with unexpected circumstances. Importantly, participants scored within the normal range on all the measures of psychological well-being that were used. Although discrete episodes of anxiety or low mood had been experienced at different times, no examples of overt psychiatric illness were described. Emotional reactions were transient and usually in response to specific events such as bullying or failure of their coping strategies. Young people said that at these times it would have been helpful to talk to someone about their worries or keep a diary. So with growing independence, the focus of feeling good and taking charge comes to rest much more with the young person. Telling is a good example of this – in this study, telling was seen as the prerogative of the young person, something they wished very strongly to be in charge of. Careful thought was needed before telling and some clear goal was required. The study also suggests things that teenagers may need support with at this stage – gaining confidence with girlfriends/boyfriends, coping with peers and tricky situations, dealing with times when they feel anxious or down.