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Mum wins fight for changes to premature baby guidelines

The Welsh Government issued the new guidance because of concerns from one mother Credit: PA

There is new guidance on how the NHS should care for premature babies with a low chance of survival.

Published by the Welsh Government, the guidelines set out what Health Boards should do to care for babies born alive before 24 weeks of gestation and how to support their families.

The Welsh Health Circular (WHC) was published in response to a concern from a mother who lost her son, Riley, who died at the age of 22 weeks and 4 days in December 2013.

Current professional guidance from the British Association of Perinatal Medicine (BAPM) do not state what the NHS should do to care for babies born alive before 24 weeks.

Over the past few years, Emma Jones has been working with the Welsh Government to develop additional guidance that promotes the 'highest quality, evidence-based and compassionate services' for mothers and babies.

A doctor from NHS Wales has thanked Emma Jones for raising her concerns Credit: PA

The guidance states that where the birth of a baby will be premature, maternity teams should consult the on call neonatal or paediatric team to ensure that clinical assessments are undertaken.

Additionally, the family of the baby will be involved in the decision making about ongoing care. It found bereavement services are needed by many families, and every Health Board in Wales now has a bereavement midwife lead to promote best practice.

Emma Jones said:

My journey for change started at the National Assembly when I presented my signed petition. From Riley’s death came a fight for change, which ended in success.

– Mother, Emma Jones

The Chief Medical Officer for Wales and Medical Director of NHS Wales, Dr Frank Atherton said:

Very tiny babies, even when they are born alive, may not be able to be resuscitated because their airways and lungs are too immature and delicate to withstand intubation and ventilation, and their blood vessels too small to administer medicines or fluids.

We recognised there was a need for the Welsh Government to develop this additional guidance, because the current professional guidance from the British Association of Perinatal Medicine (BAPM) does not state what the NHS should do to care for babies born alive before 24 weeks.

We are very grateful to Emma Jones for sharing her painful experiences with us, and for working with us to develop the new guidance, which will help maternity services to support sensitively mothers and families where babies are born on the threshold of survival.

– Wales and Medical Director of NHS Wales, Dr Frank Atherton