Vascular anomalies, haemangiomas and vascular malformations

    1. Haemangioma
    2. KHE and Tufted Angioma
    3. Lymphatic malformation (Cystic hygroma, lymphangioma)
    4. Venous malformation and Glomuvenous malformation
    5. Capillary malformation (Port Wine Stain)
    6. Arteriovenous malformation (AVM)
    7. Growing up with a vascular anomaly
    8. Research

     What is the difference between a haemangioma and a vascular malformation?

    Haemangioma, also known as a strawberry birthmark or strawberry naevus, is the most common tumour that occurs during childhood.  Haemangiomas are usually not present at birth though there may be a small red mark at the site. Within one to four weeks of birth, they grow rapidly.  They reach their peak size around four to nine months of age before slowly going away (‘involuting’) over several years.  Sometimes they go away completely, but more often they leave some mark on the skin.  There are other, much less common forms of haemangioma, which can behave differently.

    Vascular malformations are not as common as haemangiomas.  They consist of abnormal concentrations of one or other type of blood vessel in one part of the body. We believe that they are generally present at birth. If they are underneath the skin, they may not be noticed until later in childhood when they may become painful or larger.  Typically they do not grow in the way that haemangiomas do, but increase in size in proportion to the child as the child grows.  If not treated they usually remain lifelong.

    There are several different types of vascular malformation:

    • Lymphatic malformation (old name ‘cystic hygroma’ or ‘lymphangioma’)
    • Venous malformation (old name ‘cavernous haemangioma’)
    • Capillary malformation (or ‘Port Wine Stain’)
    • Arteriovenous malformation (AVM)
    • Glomuvenous malformation (or ‘Glomangioma’)

    Some vascular malformations have in the past incorrectly been called ‘haemangiomas’. All specialists in birthmarks use consistent names but many doctors who work in other areas will still call a vascular malformation a ‘haemangioma’. The problem of differing names for vascular anomalies is discussed below.

    What treatments are available for haemangiomas and vascular malformations?

    There are a range of different treatments available for both haemangiomas and vascular malformations.  These include drug treatments, laser, surgery and injection treatment by interventional radiologists.  The exact treatment depends on the nature of the condition and treatment decisions are often complex. Sometimes more than one treatment may be appropriate, so choosing the best treatment requires consultation between different specialists.  For this reason, children with vascular anomalies are often managed by a multidisciplinary team of specialists who provide a dedicated service for the treatment of vascular anomalies.

    Where do I find a multidisciplinary team that treats vascular anomalies?

    In many large cities it is possible to find a multidisciplinary team managing vascular anomalies.  In Melbourne, the multidisciplinary team is based at the Royal Children’s Hospital.  Members of the team also work in other hospitals where adults and children can be treated.  The full team meets at the Royal Children’s Hospital each month, and regularly discuss cases and plan treatment at other times.

    The Royal Children’s Hospital, Melbourne team includes:

    Rod Phillips Paediatric skin specialist
    Tony Penington Plastic Surgeon
    James Burnes  Interventional Radiologist
    John Vrazas Interventional Radiologist
    Elhamy Bekhit Interventional Radiologist
    Phillip Bekhor Dermatologist/Laser specialist
    David Orchard Dermatologist/Laser specialist
    Zerina Lokmic Scientist/Nurse
    Chris Harris Orthopaedic surgeon
    Lisa Orme Paediatric oncologist
    Sue Hodson Lymphoedema specialist
    John Hutson Paediatric surgeon
    Julian Kelly Paediatrician/lymphoedema specialist
    Jane Phillips Physiotherapist
    Fiorella Alberico Lymphoedema specialist
    Penelope Sanderson Manager, Mercy lymphoedema clinic
    Roberta Honigman Counsellor, social work

    Referrals to the clinic need to be made in writing or by email by a medical practitioner.

    Other Multidisciplinary teams in Australia are located at:

    Sydney Sydney Children's Hospital and Westmead Children's Hospital
    Brisbane Lady Cilento Children's Hospital

    Why are there no photographs of children with vascular malformations on this site?

    Parents of children with vascular anomalies have told us that looking at pictures of other children with vascular malformations on the internet have been among their most distressing experiences.  No two children with a vascular malformation look the same.  When doctors put pictures of children with vascular malformations on the internet they often choose the most dramatic looking pictures which are not representative of the overall spread of cases.   Many parents assume that their child’s condition may progress to look like the worst pictures they have seen but this is not the case.  Seeing pictures of other children does not tell you how your child will look.  We believe that showing pictures creates more confusion for parents than it provides information and have decided not to show pictures on our website.  It is best to discuss with your own doctor what the future may hold.  Sometimes there may be a place for seeing carefully selected photographs, but even these will not give a perfect guide to the future.

    A note about names

    Even a brief search on the internet will show that there is a lot of variation in what names are used to refer to the many different vascular anomalies.  Sometimes different doctors use different names to talk about one condition.  This occurs even in scientific articles and radiology or pathology reports.  This is not only very confusing for parents, it also could hold back the development and use of the best treatments.   The International Society for the Study of Vascular Anomalies (ISSVA) has an accurate and precise naming system which is used on this site and by other expert groups internationally. Many doctors still like to use older terms, partly because they are used to them, partly because they like the history attached to the old names (many go back to the famous nineteenth century German pathologist Rudolph Virchow).  Many doctors still do not know about the new system.

    ISSVA is the international group which brings together experts from around the world every two years to discuss, exchange information and develop new treatments for vascular anomalies.  It maintains communication between all expert centres worldwide so that all centres are aware of the results being achieved elsewhere with new and developing treatments.  ISSVA has an up to date system of names for vascular anomalies which ensures that doctors who treat vascular anomalies all speak the same language.  We strongly support the use of the ISSVA classification of vascular anomalies.  If your treating doctor is not a member of ISSVA, ask them why not!