Lighthouse Project: the neonatal butterfly project – support for grieving parents and guidance for health professionals

The purple butterfly cot card

July is the month where we shed light on the complex and sensitive topic of ethical decision making and palliative care in neonatology and obstetrics. One outstanding project as part of this monthly topic, is the pioneer work of the neonatal butterfly project, a group of nurses, doctors and other academics, working with parents who have experienced the loss of their baby on a neonatal unit. However, the project does not only address health  professionals but also family members and friends with advice and lists support groups and other helpful contacts on their project page. 

The neonatal butterfly project wants to improve care for bereaved parents, by improving staff knowledge, understanding, and practice. Its network can look back on more than 10 years of experience within this subject, offering workshops for parents plus making information accessible to health care professionals concerning the experiences and needs of affected parents. The purple butterfly, the project’s logo, can be put on the cot of the surviving sibling in hospital or in the medical record and resembles the deceased brother or sister. Parents can write the name of their deceased child on the card. This shall raise awareness that the surviving baby had a brother or sister and that parents have not only welcomed a baby but are, at the same time, coping with the loss of another. The cot cards are freely available to hospitals worldwide. In approaching affected parents, asking them to share the experiences they’ve made in hospital after baby loss, the network gained valuable insight into the emotionally complex and challenging situation these parents have to face. Evaluating their feedback, the network conducted guidelines with concrete examples and cases, which serve as   practical guidance for health professionals how to best react when being confronted with bereaved parents. Unwillingly tactless or hurtful behaviour is often the result of insecurity, hence the neonatal butterfly guidelines shall help doctors and nurses to develop a self-confident yet sympathetic way to handle parents in such a difficult situation. Currently the guidelines are available in 5 languages.

Besides the guidelines, the project also offers experience reports from parents, sharing their very personal story. These stories enable the reader to get to know the thoughts and feelings a grieving mother or father has and how they experienced the behaviour of the people around them. Sometimes they met caring people but in other situations they had to deal with a lack of understanding for their needs and were hence put in uncomfortable situations.  Between 2016 and 2017, the network extended its offer and launched a film project with 8 families talking about their specific experience of baby loss.

Losing a baby is painfully tragic and requires self-confidence to share it with strangers. In order to protect the parents, the network introduced some access barriers so certain, sensitive information is only distributed to persons with a genuine interest in the matter. Access to material like films, parent stories or the guidelines requires an online registration. Other information like contacts to support groups or informative websites are offered without any restrictions.

View more: (project website)