Butterflies and Ribbons: Supporting Families Facing Perinatal Loss in a Multiple Pregnancy
Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal.
Interdisciplinary investigations have examined the views and experiences of parents suffering the loss of a co-twin or triplet, as well as a diverse group of health professionals including nurses, doctors, and midwives as well as health professionals working in the community. These studies have shown that bereaved parents do not feel well supported and even feel abandoned for a number of reasons. First, many clinicians are unaware that they have suffered a loss and may ask questions such as “Do you have other children?”, often addressed to parents who suffered the loss days ago, in the same unit. Second, when aware, many do not know what to say or how to support a family. They tend to only focus their attention on the surviving child(ren). The situation of these parents is unique in the healthcare system: they suffered the loss of a child and are grieving, but at the same time, one baby is still alive and often making progress. They must continue to visit the hospital where many feel they have experienced a trauma and try to celebrate the achievements of their surviving baby(ies).
General education in ethics and palliative care is limited in the medical and nursing curriculum, especially perinatal palliative care. Education about this very specific and unique situation in palliative care (that is still quite common in NICUs) is generally absent from teaching curriculums. Third, when trying to help, some comments or actions may be harmful, such as “At least you have another one”. After these multiple studies, a checklist was developed to optimize the care of these families. Eight themes and steps important to bereaved parents were to be incorporated into training, education, and practice, and were co-designed by parents and stafff. These themes were validated in a series of workshops with parents, the public, advocacy groups, and health professionals.
Acknowledge the bereavement and avoid minimizing the loss
- Support the parents emotionally
- Inform: provide appropriate information
- Continuity of staffing and information
- Memory making: physical, emotional
- Logistics: cot occupancy and position in the NICU
- Discharge: prepare parents for going home
During the workshops, a parent in Newcastle suggested that a butterfly symbol, to identify a baby whose co-multiple(s) had died, could be placed on the incubator or cot of any surviving baby. The butterfly project, aimed at teaching those eight important themes, was born, developed, and attracted international interest. The Ribbon project was developed at the CHU (University Health Center) Sainte-Justine for the needs of clinicians and parents in Montreal (the largest level 4 NICU in Canada, where the parents are almost all francophone). This teaching is also based on the eight themes developed using extensive parental perspectives. The parent advisory board did not appreciate the butterfly symbol to represent perinatal and neonatal deaths. They preferred to avoid the butterfly symbolism and desired a neutral symbol, choosing the perinatal loss ribbon as a symbol
Methods: Two educational programs were evaluated with pre- and post-course surveys, questionnaires administered to participants, and audits.
Results: In the online Butterfly project (UK; n = 734 participants), all participants reported that the training exceeded or met their expectations, 97% reported they learned new skills, and 48% had already applied them. Participants expressed gratitude in their open-ended answers: “I feel a lot more confident in supporting parents in this situation”. In the Ribbon project (workshop for neonatal clinicians, Quebec; n = 242), 97% were satisfied with the training and reported feeling more comfortable caring for bereaved parents. Knowledge improved pre–post training. Audits revealed that 100% of cases were identified on the incubator and the baby’s/babies’ admission card, all changed rooms after the death of their co-twin/triplet, and all had the name of their co-twin/triplet on the discharge summary. All clinicians (55) knew what the ribbon symbol meant when asked during surprise audits at the bedside.
Conclusion: Different educational strategies to optimize communication with families after the perinatal loss of a co-twin are appreciated and have a positive impact.
We have put a lot of effort into making this training useful, hoping that it can truly make a difference for families affected by perinatal loss.
Thank you to everyone who, day after day, support these parents with humanity and compassion. Your role is invaluable.
For more information: https://www.mdpi.com/2227-9067/10/8/1407