Can you imagine suffering the loss of a baby while also continuing to care for, nurture and celebrate the birth of one or more other children? Parents expecting multiples face many challenge throughout the pregnancies, delivery and lives of their children, and in some cases not all babies in a multiple birth pregnancy survive. These families are in a unique and isolation situation of simultaneous grief and celebration. The challenge to grieve the deceased child or children while caring for the living is something only these parents can fully understand. The main goal of the Purple Butterfly project is to provide resources to help ease the isolation of parents who have lost one or more babies within a set of multiples (twins, triplets, quads or more).
We were inspired by the story of Lewis Cann and Millie Smith and their twin daughters Callie and Skye of the UK. When Skye passed away shortly after birth and Callie was in the NICU, another mother of twins, seeing only one baby for this family, commented... "Well, at least you don't have twins." While this comment was hurtful, it also inspired them to create a foundation in Skye's name, The Skye High Foundation. They set out to help recognize the survivors of a multiple-birth pregnancy and honour the co-multiple siblings that were lost. They created a purple butterfly sticker to place on the bassinet, chart and/or hospital room door of the surviving babies indicating that they have sibling/s that did not survive. This symbol allows staff and visitors to recognize this unique situation and avoid unintentional questions and comments.
The project will provide families with resources designed to help them grieve, heal and celebrate. The rarity and uniqueness of this situation means families may not be able to find anyone who has been through the same circumstances. Therefore, they often don’t connect and those around them say nothing in order to not say the wrong thing. This social isolation can lead to increased case of postpartum depression. Compassionate resources would be developed and delivered to the hospitals, with education for professionals on how to deliver this information.
Information packages and training materials for medical staff will be provided to hospitals. By educating hospital staff as to how to help these families deal with the grief, ease any guilt and to offer suggestion on how to enjoy and celebrate the life/lives of their surviving children whether they are born or still continuing with the pregnancy.
Finally, and perhaps most importantly we hope to develop a peer to peer support network with families willing to talk about the loss and joy with families going through similar situations. We believe this connection will help families bond and learn to celebrate the births and grieve the loss of their children.
The Canadian Purple Butterfly Loss Support package has been lovingly created by the volunteers at Multiple Births Canada, in consultation with PAIL (Pregnancy and Infant Loss) Network, Dr. Jon Barrett at Sunnybrook Women's Hospital, Lynda Haddon our Multiple Births Canada Loss Specialist and families who have walked the path of having twins, triplets or more, as well as those families who have lost one, more or all of their multiple-birth babies. If you have any questions or are looking for resources please email email@example.com.