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Helping parents navigate Neonatal Intensive Care Units

News and comment
A premature baby's foot, with monitor attached, in an incubator

A new resource is supporting new and soon-to-parents through the complex and unique environment of a Neonatal Intensive Care Unit (NICU). The Palliative Care Information for Parents, which we’ve made together with charity Bliss, is being piloted in NICUs and children’s hospices with specialist antenatal and neonatal services across the country.

Navigating an unfamiliar environment can be overwhelming

No new parent expects to find themselves in a Neonatal Intensive Care Unit (NICU), yet when your newborn is seriously ill, it is exactly where you need to be. In NICU, it’s normal for lights to be dimmed, and for the only sounds to be hushed voices and the beeping of monitors. It’s where highly trained specialists provide the best care and comfort, and it can be an incredibly overwhelming environment for soon-to-be and new parents. For some, it will be the start of a long journey through children’s palliative care, and for others, it may be where they make precious memories as they say goodbye to their child.

The backdrop features a baby in a neonatal intensive care unit incubator. On top of the image is a picture of the front cover of a leaflet. Its title is 'Palliative Care Information for Parents' with the Bliss and Together for Short Lives charity logos

Helping parents with medical terminology and further support

From phrases like children’s palliative care and end of life care to prognosis and diagnosis, the leaflet explains some of the medical phrases which they will hear following the devastating news that their child’s future is uncertain. It talks parents through conversations they will have with care teams and the role parents themselves will play in the care of their child while they are in NICU. The leaflet also guides parents through memory-making and bereavement support for the whole family. Alongside the advice, parents are also signposted to organisations like ours, which can offer support from diagnosis, through treatment, to bereavement and beyond.

Made possible thanks to generous donations

No new or expecting parent should ever have to hear that their baby may not survive, but sadly this is the reality for 99,000 parents across the UK. We hope that this new resource provides much-needed clarity in a desperately uncertain and heartbreaking situation and are so grateful to everyone involved in this project, including families, professionals, and our generous donors like the National Lottery Community Fund who made this possible.

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