Millie and Louis received the joyful news that they were expecting twins, filling them with enthusiasm and anticipation. Twins were not unusual in Millie’s family, so the prospect of welcoming two more babies into their lives was met with great enthusiasm. However, their joy was tempered when doctors delivered the heartbreaking news that their infant children had anencephaly, a condition characterized by underdeveloped brain parts. Unfortunately, most babies with this condition do not survive long after birth, if they make it to birth at all. Tragically, Millie and Louis lost one of the twin girls, Skye, soon after an emergency C-section. The loss was destructive, but they found strength in their surviving and healthy daughter, Callie.
Deeply affected by their experience, Millie and Louis recognized the need to prevent well-intended but painful comments from occurring when parents lost one of their babies during a multiple birth. This accomplishment gave birth to the purple butterfly initiative. One incident in particular highlighted the importance of this cause. A comment done innocently and in jest by someone who was unaware of Skye’s existence brought Millie to tears. She fled the room, and the well-meaning individual had no idea why. Millie could not bring herself to explain the painful truth behind her reaction, and this experience spurred her and Louis to take action.
They founded the “Skye High Foundation” and introduced purple butterfly stickers, which made their way into NICU units around the world. These stickers serve as a silent but powerful signal, indicating that a family has experienced the loss of one of their babies during a multiple birth. This small but meaningful gesture helps relieve parents from the anguish of unintentionally hurtful comments during an already difficult time. While Millie and Louis understand that they cannot change the outcome for Skye, they take comfort in knowing that they are making a difference for other relatives facing similar challenges. Their efforts, through support groups and initiatives like the purple butterflies, offer solace and support to those navigating the heartbreaking journey of infant loss. As Millie aptly puts it, “Ultimately I will never be able to stop this from happening, but the more support groups we can set up and put things in place like the stickers, the better it will be.” It’s the hardest thing anyone has to deal with.” Their commitment to helping others in their time of need is a testament to their resilience and compassion.