The news that one of their infants, Skye, had been diagnosed with anencephaly, a rare and fatal disorder in which the brain and skull do not fully develop, was a heartbreaking blow to Millie and Louis when they found out they were carrying twins.
Their excitement was tempered by the devastating news. Because of the disease, Skye’s life would be cut tragically short on account of the condition. Both the arrival of two wonderful children and the approaching death of one of them were left to them to prepare for.
The special anguish that comes with the loss of one baby in a multiple birth is something that Millie and Louis experienced firsthand while they were in the neonatal intensive care unit (NICU). Most of the time, well-meaning comments made by those who were unaware of Skye’s departure reopened the wounds that they had previously been healing.
These queries, despite their lack of malicious intent, brought to mind the sibling that their child who was still alive will never ever know. They were motivated to discover a means to assist other bereaved parents who were going through a circumstance that was like to their own by this traumatic experience.
Millie and Louis began the Purple Butterfly Initiative through the Skye High Foundation, a charitable organization that was named after their cherished daughter. They were determined to protect others from the unexpected harm that they had caused.
For the purpose of providing healthcare professionals and other individuals with a means of comprehending the delicate nature of the situation without uttering a single word, their objective was to convey in a manner that was both quiet and clear that a family had lost one of their babies as a result of a multiple birth.
NICUs all over the world are now displaying the purple butterfly stickers that were created as part of this effort. In order to convey the message that one of the twins or triplets who are still alive has passed away, these stickers, which are uncomplicated yet effective, are positioned close to the incubators or cribs of the affected children. In an environment where families are already vulnerable, the Skye High Foundation has been successful in accomplishing the goal of fostering empathy and compassion through the use of this modest emblem.
It is important to note that the foundation’s activity extends beyond the butterfly stickers. The Skye High Foundation allows parents who have experienced the loss of a child as a result of a multiple birth to participate in support groups, access resources, and receive therapy. Millie and Louis are contributing to the development of a community that is resilient and characterized by understanding through their efforts.
According to Millie, “In the end, I will never be able to prevent this from occurring; however, the more support groups we are able to establish and the more things we are able to put in place, such as the stickers, the better will it be.” It is the most difficult thing that someone has to come to terms with.
Millie and Louis are not only giving solace to numerous families all around the world by turning their pain into a lifeline for others, but they are also maintaining the memory of Skye, who passed away. One purple butterfly at a time, their tenacity and compassion proceed to make a difference that is truly remarkable.
