When I meet a family for their first consultation it can be at any stage in their child’s development. I have had antenatal consultations with parents whose child has been diagnosed with a hand difference during pregnancy. This can be a very difficult time for parents as they search for information about how their child will cope with an upper limb difference in the future. Often the information that they glean, from sources such as the internet, can be inaccurate and sometimes alarming. They imagine the worst. They may not be aware of the incredible adaptive capabilities of a child. Allowing them time to express their concerns and providing a more accurate forecast of how their child is likely to fare in the future often alleviates a significant amount of their distress.
Parents hope their child will be born ‘perfect’ in every way. Coming to terms with a congenital upper limb difference can at first seem daunting. Feelings of guilt, remorse and a degree of sadness can occur. Parents are often bombarded with questions from other family members and friends, which can add to their frustration. Being able to talk to other families who have been through similar experiences I believe is invaluable. Hence organisations such as REACH are hugely important.
It takes time to fully understand a child’s needs. Decisions should not be rushed and all treatment strategies should be looked into. Surgery is not always the answer. Function should always be prioritised. Generally children are very quick to adapt. As they grow children will use their hands to their maximum ability despite their differences. They, like all children, are keen to keep up with their peers and can often do so very successfully through many adaptive strategies. Parents are very adept at picking up when their child is struggling with a particular activity. Sometimes it may be possible to help them in this regard with simple stretching regimes, splints or specific adaptive aids. Assessment can be carried out by local specialist occupational and physiotherapists or by a congenital hand surgery team such as the one that I work in at Great Ormond Street Hospital for Children. Close liaison between professionals is vital to ensure continuity of care.
In some instances surgery can help. Overall the main aim of treatment is to optimise a child’s function by ensuring that they get the most use from their hands. Enabling a child to develop independence will help them reconcile their differences and help build their confidence. Differences become less noticeable when a child incorporates their hand into function. Early surgery i.e. before a child is one year of age is indicated in some situations such as when growth of a digit is being affected. For example in some conditions all the fingers of a child’s hand can be joined together. Early release of some of these fingers can untether growth and significantly improve a child’s function. Generally however most surgery can wait until a child is over the age of one year. This allows parents and medical professionals time to identify exactly which areas require attention. It also reduces the risks of general anaesthesia. Ideally if surgery is required, the majority of it is best completed by the time a child reaches school age. This means that their hand function can be optimised in preparation for more complex tasks and missing large chunks of school time can be avoided. It must be remembered however that children continue to grow until around 16 years of age. Therefore in some instances it may be better to delay surgery to avoid having to repeat it.
Children are individual and as a result their needs are individual. In terms of appearance hands are integral to body image and social interaction. During a day a child will see their hands more often than they see their own faces. Generally children generally grow to accept they are different and are able to integrate well but there are times when they require some extra support. Initially a degree of innocence exists amongst children, which can persist for many years. However over time questions from inquisitive friends and unwanted attention from ‘newer’ groups of peers can lead to self-consciousness. Learning to deal with this attention and developing positive body image strategies is important for a child’s development. Again being able to share these concerns with other children who have similar hand differences is immensely important. In this way children and their families do not feel alone. REACH is able to provide great support in this regard by linking families together.
We, as a congenital hand team at Great Ormond Street Hospital, are very grateful to REACH for their invaluable work and hope to continue to collaborate with them in the future.
Consultant Paediatric Hand Surgeon
Great Ormond Street Hospital
London WC1N 3JH