Butterflies and Ribbons in Multiple Gestation

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This entry is adapted from the peer-reviewed paper 10.3390/children10081407

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. Formal training programs for clinicians in NICUs, using either the Butterfly or Ribbon approaches, should be routinely offered.

multiple pregnancy twins triplets

1. Introduction

Parents may suffer reproductive losses at different stages, leading to miscarriage, stillbirth, or neonatal death. Many bereaved parents undergo complex patterns of grief which can involve sadness, anxiety, guilt, and anger ^[1]. The grieving process may lead to mental health problems ^[2]^[3]. Perinatal loss is more strongly associated with complicated grief than other forms of loss ^[4]^[5]. Perinatal loss occurs more frequently in multiple pregnancy (twins, triplets, or higher order), in which case the process can be more complex as fetuses may die at different stages of pregnancy or in the neonatal period, and the remaining sibling(s) may survive ^[4]. Multiple gestations increase all pregnancy risks, such as diabetes, high blood pressure, incidence of operative delivery, transfusions, etc. Multiple gestations also increase the risks to children, including mortality. Parents can experience the death of a child who is a twin, triplet, or higher order multiple at several time points. Some children die in utero from placental or cord malfunction or accidents, or in some cases because of a selective termination of pregnancy. Children can also die at birth from unsuccessful resuscitation if they are extremely preterm and/or if they have a significant anomaly. About half the twins and almost all triplets are admitted to a neonatal intensive care unit (NICU) because of prematurity. Prematurity is associated with an increased risk of mortality and morbidity. In many countries, the rate of multiple pregnancies has been increasing, and the loss of a baby from a multiple pregnancy is thus observed more often. Grief can be especially complex in such situations. Indeed, parents cannot avoid the hospital where their child died as they need to continue caring for the surviving sibling(s) while they mourn ^[4]^[6]^[7]. This is most commonly faced in the NICU when one of the children may have died prenatally, at birth, or in the NICU after a period of neonatal intensive care. There is an increased rate of prematurity after in utero demise of a fetus in a multiple pregnancy, and congenital anomalies, which may be life-limiting, are also more common in multiple births and are often discordant. There are few resources for parents in this situation ^[8].

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 ^[9]^[10]. 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” ^[9]^[10]. After these multiple studies, a checklist was developed to optimize the care of these families ^[9]^[10]. Eight themes and steps important to bereaved parents were to be incorporated into training, education, and practice, and were co-designed by parents and staff (Table 1). These themes were validated in a series of workshops with parents, the public, advocacy groups, and health professionals ^[11]. 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 (Figure 1). The butterfly project, aimed at teaching those eight important themes, was born, developed, and attracted international interest.

Figure 1. The symbols used to identify the loss of a co-twin of a triplet.

Table 1. Key themes covered in the Butterfly and Ribbon projects.

Identify and recognize twin status
Acknowledge the bereavement
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

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 (Figure 1). These programs are the results of these studies and reflections on the perinatal death of babies from multiple pregnancies. Their goal is to train clinicians to support parents in these complex situations that are not rare in NICUs.

The eight key themes which are important to many parents of multiples who have experienced perinatal loss (Table 1) form the basis of these two training programs. The goal of this article is to examine the perspective of clinician participants and the impacts of these teaching programs. A secondary goal is to optimize knowledge transfer and teaching about this topic in obstetrics, neonatology, and pediatrics.

2. The Butterfly Project

As stated in the introduction, the Butterfly project began in Newcastle, UK, in 2016 with the goal of improving support for parents with multiple pregnancies experiencing perinatal loss, but with one or more infants admitted to the neonatal intensive care unit (NICU). This teaching initiative was based on extensive research on the perspectives of bereaved parents ^[9]. Parents reported on eight themes that were important to them (Table 1). The goal was to develop a training program to teach those themes and optimize the communication of clinicians. Another investigation, with staff caring for surviving babies, revealed their discomfort in dealing with the situation and how we could help them ^[10]. The butterfly concept was shared across health networks and has been adopted by many hospitals worldwide, and supported by co-designed information leaflets, “tips” for families, friends, and staff, along with PowerPoint slides, as well as practice guidelines, which have now been translated into more than 15 languages. Films and resources were made free to access. The www.neonatalbutterflyproject.org (accessed on 14 August 2023) has been viewed over 10,000 times globally.

This 4 h course gained accreditation from professional organizations for CME/CNE (continuing medical/nursing education) and has been endorsed by more than 20 advocacy organizations worldwide. This course is designed for clinicians, but a small number of parents have also completed the online training. Participants in the course are informed that they will be asked for feedback as part of a continuous quality improvement initiative. At the end of the course, participants in the program are asked to provide feedback using an online form asking three questions about the course: “Did it meet expectations?”, “Did you gain new knowledge or skills?”, and “Have you applied what you learned”? There is also an opportunity to leave comments.

3. The Ribbon Project

At the CHU (university health center) Sainte Justine, a level 4 mother–child hospital (67-bed NICU and 1000 admissions a year), the researchers developed a similar course adapted from the Butterfly project. The researchers use a ribbon symbol, chosen by the NICU’s bereaved parent advisory group. The training was developed as a 1 h course for all NICU clinicians. The course was accredited, free of charge, and is now available online.

Participating clinicians in the Ribbon program were surveyed before and after course completion to assess their comfort level and knowledge: if they felt they had gained knowledge and were comfortable dealing with parents in this situation. They were also given a vignette addressing the death of one of the preterm twins and asked specific questions about their approach.

References

Kersting, A.; Wagner, B. Complicated grief after perinatal loss. Dialogues Clin. Neurosci. 2012, 14, 187–194.
Westby, C.L.; Erlandsen, A.R.; Nilsen, S.A.; Visted, E.; Thimm, J.C. Depression, anxiety, PTSD, and OCD after stillbirth: A systematic review. BMC Pregnancy Childbirth 2021, 21, 782.
Shear, M.K. Grief and mourning gone awry: Pathway and course of complicated grief. Dialogues Clin. Neurosci. 2012, 14, 119–128.
Swanson, P.B.; Kane, R.T.; Pearsall-Jones, J.G.; Swanson, C.F.; Croft, M.L. How couples cope with the death of a twin or higher order multiple. Twin Res. Hum. Genet. 2009, 12, 392–402.
Pector, E.A.; Smith-Levitin, M. Mourning and psychological issues in multiple birth loss. Semin. Neonatol. 2002, 7, 247–256.
Henley, A.; Schott, J. The death of a baby before, during or shortly after birth: Good practice from the parents’ perspective. Semin. Fetal Neonatal Med. 2008, 13, 325–328.
Hendson, L.; Davies, D. Supporting and communicating with families experiencing a perinatal loss. Paediatr. Child Health 2018, 23, 549–550.
Crowe, L.; Embleton, N.; Rankin, J. Investigating available resources on loss from a multiple pregnancy to inform practice. Infant 2015, 11, 123.
Richards, J.; Graham, R.; Embleton, N.D.; Campbell, C.; Rankin, J. Mothers’ perspectives on the perinatal loss of a co-twin: A qualitative study. BMC Pregnancy Childbirth 2015, 15, 143.
Richards, J.; Graham, R.H.; Embleton, N.D.; Rankin, J. Health professionals’ perspectives on bereavement following loss from a twin pregnancy: A qualitative study. J. Perinatol. 2016, 36, 529–532.
Hayes, L.; Richards, J.; Crowe, L.; Campbell, C.; Embleton, N.D.; Rankin, J. Development of guidelines for health professionals supporting parents who have lost a baby from a multiple pregnancy. Infant 2015, 2015, 164.

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Subjects: Pediatrics

Contributors MDPI registered users' name will be linked to their SciProfiles pages. To register with us, please refer to https://encyclopedia.pub/register :

Béatrice Boutillier

Nicholas D. Embleton

Sophie Bélanger

Alexie Bigras-Mercier

Audrey Larone Juneau

Keith J. Barrington

Annie Janvier

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Update Date: 04 Sep 2023

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1. Introduction

2. The Butterfly Project

3. The Ribbon Project

References