Following the recent outbreak of Zika and the virus being declared as a ‘public health emergency of international concern’ by World Health Organisation Director General, Margaret Chan, the ICPCN has responded to the increase in children born with microcephaly due to the likely infection of mothers by the Zika virus during pregnancy and the important role of children’s palliative care.
The Zika virus is mainly spread through the bite of an infected Aedes species of mosquito. The virus displays mild symptoms including fever, rash, joint pain and conjunctivitis which appears between 2 to 7 days of being bitten by an infected mosquito. The virus itself is not a life-limiting condition, however, various birth defects have been identified in babies of mothers who were infected with the Zika virus during pregnancy. The most common of these defects in babies is microcephaly. Congenital microcephaly is a birth defect where a baby’s head is considerably smaller than normal, due to an underdeveloped brain. The effects of microcephaly on a child may vary. Some children will have normal intelligence and won’t experience any challenges, whilst other children may experience learning difficulties, speech delays and impaired motor functions amongst other symptoms.There is no cure for microcephaly so any treatment options will be palliative, with an aim to reduce symptoms, prevent complications and improve the child’s quality of life.
The International Children’s Palliative Care Network is concerned about the sudden increase in the incidence of microcephaly in Brazil and other countries. Whilst the link between the Zika virus and microcephaly is still being investigated, the organisation believes it calls for an intensive palliative care response to provide the necessary care for the affected children and their families. Joan Marston, ICPCN Chief Executive, said
“As the ICPCN we are concerned about the reported number of babies born with microcephaly and other neurological complications, especially in Brazil and in the Americas, and we are pleased that the World Health Organization (WHO) has advised that this situation constitutes an extraordinary event and public health threat. Whether or not the Zika virus will be shown to be the cause, the real tragedy is the thousands of babies born with these anomalies and the impact so many families left caring for babies with disabilities and a possible limited life-expectancy.
While we fully support WHO Director-General Dr Margaret Chan’s call for an international response to reduce the threat; as concerned children’s palliative care advocates we call for an international response to provide palliative care, including support for the families; from the perinatal period and throughout the shortened lives of many of these very vulnerable babies.”
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Notes for Editors
The International Children’s Palliative Care Network (ICPCN) is a network of organisations and individuals working in children’s palliative care and believes that the total needs of life- limited children and their families should be met to encompass physical, social, spiritual and developmental aspects of care. To find out more about children’s palliative care worldwide please go to www.icpcn.org
To live in a world where children’s palliative care is acknowledged and respected as a unique service, and every child and young person with life-limiting or life-threatening conditions and their families can receive the best quality of life and care regardless of which country they live in. The International Children’s Palliative Care Network (ICPCN) shares a vision that the total need of life-threatened or life-limited children should be met to encompass physical, emotional, spiritual and developmental aspects of care.
Our mission is to achieve the best quality of life and care for children and young people with life-limiting conditions, their families and carers worldwide, by raising awareness of children’s palliative care, lobbying for the global development of children’s palliative care services, and sharing expertise, skills and knowledge.
- To help services across the world to develop and meet the total care and support needs of life-limited children and their families.
- To advocate and raise awareness of children’s palliative care and the specific needs of life-limited or life-threatened children and their families.
- To facilitate communication and sharing of resources, information and research worldwide, and to provide a ‘one stop shop’ for information relating to children’s palliative care.
- To campaign for the global development of children’s palliative care services.
- To enable the sharing of expertise and information between children’s palliative care practitioners.
- To increase the international evidence base for children’s palliative care through education and research.
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