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Growing up with a vascular anomaly

  • Will my child have a ‘normal’ life?

    The aim of treating vascular anomalies is that every child should be able to engage in all the normal activities of childhood and adult life.  The burdens of frequent operations and other treatments can sometimes interfere with school and other activities. We work with you to minimise these disruptions. There is no evidence that children with vascular anomalies have any reduction in their life expectancy, and we believe that nearly all children with vascular malformations go on to live productive, healthy adult lives. One of the gaps in our knowledge concerns the life experience of vascular anomalies patients once they leave care, and we appreciate hearing from adult patients after they have left treatment about their experiences.

    What activities should be restricted for a child with a vascular malformation?

    Wherever possible, children with vascular malformations should participate in all the normal activities of childhood.  Except in rare circumstances, there is no reason why they should not play particular sports. Exercise is an important part of a healthy childhood and a child with a vascular malformation should not be denied the benefits of participating in sport unless there is a good specific reason.

    The blood vessels in vascular anomalies are generally more fragile than normal, and therefore have a tendency to develop bruises more easily. Generally, if the child wants to play a contact sport they should give it a go. If they find that they get bruising or other problems, then this may be a reason to discuss beginning treatment. Left to themselves, children with a vascular malformation will usually find their way into a sport which suits them. 

    When should we seek treatment and when is it best to leave a vascular malformation alone?

    The decision about when to start or continue treatment is one that needs to be made between the treating doctors and the parents, and as the child grows up, by the child themselves. In fact, as the child enters teenage years, it is important that they take an increasing role in treatment decisions.

    The decision to start treatment depends on a balance between the benefits in relieving symptoms and the risks of surgery or other treatment. Each child’s symptoms are different, so the balance will be different in every case.  It is usually a mistake to treat a vascular malformation just ‘because it is there’.  The doctor, parents and child should discuss exactly how the malformation is affecting daily life, and in what way life would be better if treatment is successful.  For instance there may be some activity the child cannot do or is restricted in, that treating the malformation will allow them to do.  Improving the appearance of the malformation is another good reason for treatment.  Having a clear aim is the most important part of planning treatment of vascular anomalies.

    Can my child travel on an airplane?

    There is no reason why people with vascular anomalies should not fly on airplanes.  Anyone who takes a long haul flight has a risk of developing deep vein thrombosis and this may be more of a concern for someone with an extensive vascular malformation in the lower limb. A compression garment and aspirin prior to flying may help prevent thrombosis.  Discuss this with your treating doctor if you have a concern.

    What psychological supports are available?

    Unfortunately, we are not able to provide as much psychological support for children with vascular anomalies as we would like. There are some supports available.  In some cases it may be possible to access a neuropsychologist, and there is a social worker attached to the plastic surgery unit.  A local general paediatrician is an important person who can provide support and advice close to home, and can also provide referral to a psychologist if necessary.

    Is bullying a problem for children with vascular and other birthmarks?

    Most schools have active anti-bullying programmes and while these are important in reducing the incidence of bullying, no school can ever be confident of completely eliminating it.  Any child who is in any way different can be the target of bullying, but this does not mean that all children who look different will be bullied. Children who are bullied often blame themselves and are reluctant to tell adults what is happening, partly because they fear that the adults may over react and make things worse. Encouraging your child to talk to you or another trusted adult in a calm and supportive environment about problems at school is important.  Building resilience and social skills is as important as changing bullying behaviour.  There are some useful resources available on the internet, for instance from the Changing Faces support group based in the UK.

    Will my child’s offspring inherit the vascular malformation?

    Almost certainly not. In a very few cases, vascular malformations can run in families, but usually if this is the case there will already be a history of vascular birthmarks in family members. Genetic testing is very rarely required, especially if there is only one malformation and no family history.