The Butterfly project: supporting parents who have lost a baby from a multiple pregnancy
We are delighted to announce our new website with themed film content and access to resources for health professionals, higher education and parents. Please visit us there
www.neonatalbutterflyproject.org |
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We recently spoke about some of our work on BBC radio - click on the clips below
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In our research studies spoke to parents who have suffered the loss of a baby, either before or after birth. Our focus was on multiple (twin) pregnancies, and we also spoke to health care professionals such as midwives, neonatal nurses and doctors. We wanted to find out whether there was anything we could do to make things better for parents.
Almost all parents said they found it difficult that staff (but also friends) did not appear to know what had happened, or forgot that their baby was from a twin or triplet pregnancy. Most parents found that upsetting, and especially when they were on SCBU surrounded by lots of people. However, these issues also arose for parents whose babies did not have problems, and went home soon after they were born. Parents told us they would have liked us to continue remembering the twin (or triplet) nature of the pregnancy.
We have developed information leaflets, education packages and Butterfly cot cards. We are also developing a short film. We want to share these resources with hospitals to educate staff, and promote awareness of the challenges parents' face.
Click the links at the top of the page to complete a questionnaire and help cascade the message. At present we have engaged with >100 hospitals throughout the UK, but also have interest from across the world and have translated the guidelines into Spanish. Please help us spread the word. These resources are all free, but we would like to know who uses them so we can get feedback and develop and share resources in the future.
International collaborator? We are working with colleagues to share this project in other countries. If you would like to offer a translation into another language please contact us below. Thanks.
Almost all parents said they found it difficult that staff (but also friends) did not appear to know what had happened, or forgot that their baby was from a twin or triplet pregnancy. Most parents found that upsetting, and especially when they were on SCBU surrounded by lots of people. However, these issues also arose for parents whose babies did not have problems, and went home soon after they were born. Parents told us they would have liked us to continue remembering the twin (or triplet) nature of the pregnancy.
We have developed information leaflets, education packages and Butterfly cot cards. We are also developing a short film. We want to share these resources with hospitals to educate staff, and promote awareness of the challenges parents' face.
Click the links at the top of the page to complete a questionnaire and help cascade the message. At present we have engaged with >100 hospitals throughout the UK, but also have interest from across the world and have translated the guidelines into Spanish. Please help us spread the word. These resources are all free, but we would like to know who uses them so we can get feedback and develop and share resources in the future.
International collaborator? We are working with colleagues to share this project in other countries. If you would like to offer a translation into another language please contact us below. Thanks.
Our partners, and other links relating to work with parents especially in the areas of neonatal loss and stillbirth
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The Butterfly project: where did it start?
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Multiple pregnancies carry an increased risk of adverse outcome compared to singleton pregnancies. Whilst these clinical risks are well documented, there is little formal objective research of parents’ and health professionals’ experience of reproductive loss (we use this term to refer to a loss in pregnancy or whilst receiving neonatal care) in a multiple pregnancy. The limited existing studies are valuable, but are small in nature. In the North East of England, among 9,805 multiple pregnancies notified to the Northern Survey of Twins and Multiple Pregnancies during 1998-2007, one or more baby was lost in 857 sets. Thus, 9% of all multiple pregnancies result in a reproductive loss event during pregnancy and/or the neonatal period.
One parent, following the stillbirth of one of her twin sons, observed that ‘the discomfort of her professional colleagues was obvious’ and that ‘as a way of coping with their distress, they limited conversations to a safe, technical discussion of facts, options and risks.’ |
In our previous work focusing on withdrawal of treatment from sick neonates, in which some parents of multiple pregnancies were interviewed, we found that although the parents and health professionals interviewed were generally very satisfied with the care provided/received, further in-depth exploration in more complex circumstances, such as parents who decline an offer to withdraw life saving support, and parents of twins who have lost one baby whilst the other remains in the neonatal intensive care unit, is required.
Whilst organisations such as the Multiple Births Foundation (MPF) and the Twins and Multiple Births Association (TAMBA) offer professional support to families, they have identified reproductive loss in multiple pregnancies as a particular area in which much still needs to be learnt. The aim of our study was to explore staff and parental experiences. We conducted this with full ethics approval to conduct in-depth, recorded, transcribed and analysed interviews with parents and staff. |
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Research team contacts. You can contact us directly using the contact form on the about page.
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Louise Hayes is Research Associate in the Institute of Health and Society, Newcastle University
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Judith Rankin is Professor of Maternal and Perinatal Epidemiology
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Dr Nicholas Embleton is a Consultant Neonatal Paediatrician
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References
1. Papiernik E. Reducing the risk of preterm delivery. In: Keith LG, Papiernik E, Keith DM, Luke B (eds). Multiple Pregnancy: Epidemiology, Gestation, and Perinatal Outcome. London: Parthenon Publishing Group, 1995, 437-51.
2. Glinianaia SV, Pharoah P, Sturgiss SN. Comparative trends in cause-specific fetal and neonatal mortality rates in twin and singleton births in the North of England, 1982–94. Br J Obstet Gynaecol 2000; 107:452-60.
3. Glinianaia SV, Pharoah POD, Wright C, Rankin J. Fetal or infant death in twin pregnancy: neurodevelopmental consequence for the survivor. Arch Dis Child Fetal Neonatal Ed 2002;86:F9-F15.
4. Pharoah PO. Risk of cerebral palsy in multiple pregnancies. Clin Perinatol 2006; 33:301-13.
5. Glinianaia SV, Rankin J, Wright C. Congenital anomalies in twins: a register-based study. Hum Reprod 2008; 23:1306-11.
6. Pector EA. Personal experiences of bereaved twins, parents of twins and their carers. Twin Research 2002; 5:236-44.
7. Graham R, Mason K, Embleton N, Rankin J, Robson SC. Withdrawal of treatment from sick neonates: a qualitative study of parents' and health professionals' perspectives'. Report to Tiny Lives, 2008.
8. Harvey S, Snowdon C, Elbourne D. Effectiveness of bereavement interventions in neonatal intensive care: a review of the evidence. Sem Fetal Neonat Med 2008; 13:341-56.
9. Northern Regional Health Authority Coordinating Group. Perinatal mortality: a continuing collaborative regional survey. BMJ 1984; 288:1717–1720.
10. Northern Regional Maternity Survey Office Annual Report, 2007. RMSO/ North East Public Health Observatory, 2009. ISBN: 13978-1-903945-68-1
11. Silverman D (2006) Interpreting Qualitative Data Third Edition London: Sage.
12. Young A (1990) Femininity in Dissent London: Routledge
1. Papiernik E. Reducing the risk of preterm delivery. In: Keith LG, Papiernik E, Keith DM, Luke B (eds). Multiple Pregnancy: Epidemiology, Gestation, and Perinatal Outcome. London: Parthenon Publishing Group, 1995, 437-51.
2. Glinianaia SV, Pharoah P, Sturgiss SN. Comparative trends in cause-specific fetal and neonatal mortality rates in twin and singleton births in the North of England, 1982–94. Br J Obstet Gynaecol 2000; 107:452-60.
3. Glinianaia SV, Pharoah POD, Wright C, Rankin J. Fetal or infant death in twin pregnancy: neurodevelopmental consequence for the survivor. Arch Dis Child Fetal Neonatal Ed 2002;86:F9-F15.
4. Pharoah PO. Risk of cerebral palsy in multiple pregnancies. Clin Perinatol 2006; 33:301-13.
5. Glinianaia SV, Rankin J, Wright C. Congenital anomalies in twins: a register-based study. Hum Reprod 2008; 23:1306-11.
6. Pector EA. Personal experiences of bereaved twins, parents of twins and their carers. Twin Research 2002; 5:236-44.
7. Graham R, Mason K, Embleton N, Rankin J, Robson SC. Withdrawal of treatment from sick neonates: a qualitative study of parents' and health professionals' perspectives'. Report to Tiny Lives, 2008.
8. Harvey S, Snowdon C, Elbourne D. Effectiveness of bereavement interventions in neonatal intensive care: a review of the evidence. Sem Fetal Neonat Med 2008; 13:341-56.
9. Northern Regional Health Authority Coordinating Group. Perinatal mortality: a continuing collaborative regional survey. BMJ 1984; 288:1717–1720.
10. Northern Regional Maternity Survey Office Annual Report, 2007. RMSO/ North East Public Health Observatory, 2009. ISBN: 13978-1-903945-68-1
11. Silverman D (2006) Interpreting Qualitative Data Third Edition London: Sage.
12. Young A (1990) Femininity in Dissent London: Routledge