The Heartbreaking Story Of Purple Butterflies In NICUs Around The World

The Heartbreaking Story Of Purple Butterflies In NICUs Around The World

Oct 12, 2020Shilo Maloney

Childbirth is such a beautiful yet nerve-wracking experience that leads to some incredible beginnings but also some very very sour endings in some heartbreaking cases. Either way, women who are in the paternity ward often need a lot of faith and hope after carrying bundles of joy with them for several months. That hope came in a little symbol created by parents Millie Smith and Lewis Cann, who uplifted spirits to parents using a series of cut-outs they sprawled throughout the hospital that caught the eyes of many people.

Millie and Lewis

It was 2015 when Millie Cann found out that she was pregnant with her and Lewis Cann's child. But this was only one side of their great news. Millie developed her 'mother's intuition' early, and before any sonogram, she knew it in her gut that she was possibly facing the reality of having twins. This instinct was true, as it turned out that she had identical twins on the way. This was a happy moment for the couple, but there was another twist in their tale ahead.

The Incompatible Condition

Two weeks after finding out that they were bound to be parents to two loving children, the couple was suddenly faced with a sudden complication that they never could've been prepared for. One of their beautiful bundles was struck with a condition that was classified as "incompatible with life". The scan revealed this news to them and almost instantly, their family picture was facing some form of uncertainty.

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A High-Risk Pregnancy

During a scan, Millie could tell from the doctor's silence that there was something off in a moment that was supposed to be filled with unbridled joy. The couple was then notified that one of their babies had anencephaly, a neural tube defect where the upper part of the neural tube does not close all the way, preventing parts of the brain from forming correctly. This devastated the couple, but they were then faced with the choice to either avoid continuing with the pregnancy or face a high-risk one. 

The Fate And Namesake

Millie and Lewis were more than willing, by choice, to face the difficult pregnancy that was almost certainly and unfortunately doomed. They even had to be accompanied through it with the help of a bereavement midwife, Jo Bull, who would be able to provide emotional support to parents who were facing the loss of their child that they had no ability to save. They still went through with, even naming their twins in the process.

Skye's The Limit

The twin daughters were named Skye and Callie. Skye was the name of the daughter whose life would be painfully and unfairly short-lived. No matter what condition Skye was faced with, Millie and Lewis dignified her with a beautiful name. Skye was given her name with her pending fate in mind, as the couple would 'look to the sky' and remember their daughter, in what is a touching sentiment. And within 30 weeks of pregnancy, it was time.

A Life Short-lived

Millie needed an emergency C-section once she went into labor. Both twins were born at Kingston Hospital in the UK. There was a plan already laid out for Millie and other women who would give birth and soon have to say goodbye to one of their children. Their bereavement wife was allowed to be with them, and the couple was also placed in a special room called the 'Daisy Room' where families could spend time with their baby before they pass away. There was something with Skye that surprised everyone when she was born, despite what they were told.

The Sound of Skye

Millie and Lewis were both told by doctors that once Skye was born, she wouldn't make a sound. But, she and her sister both did when they came into the world. This was something the couple cherished despite the slight bit of hope this gave them. The ability to spend three hours with Skye and hear her cries truly meant that she had life in her. Skye was loved and held before slowly drifting away to silence, a moment that shattered Millie and Lewis.

A Selfless Symbol

In the wake of such a painful loss, Millie and Lewis still had their beautiful and healthy little girl named Callie in the NICU. Callie would, without a doubt, tell her about her courageous twin sister that she shared a moment with, no matter the brevity of their time together. Millie and Lewis knew that they were not the first and certainly not the last set of parents who would've experienced the heartbreak they did with their child. And therefore, to help other parents cope they had a selfless moment that they knew would help other parents in moments so devastating.

Forgetting Skye

Roughly a month passed following the death of Skye, and Millie began to notice some sort of a pattern. In the process of helping Millie and Lewis heal from their loss, nurses around them in the paternity ward began to speak less about Skye. As a result, fewer people flooding in and out of the hospital who met Millie and Lewis had any idea about Skye and their difficult pregnancy but knew about Callie. This didn't sit well with Millie at all.

The Cutting Comment

The extent of this came one morning when an overwhelmed mother of twins came into the NICU and commented that Millie was 'lucky' that she wasn't having twins. This was said by a woman who fairly had no knowledge of what Millie was going through. After storming out in tears, Millie admitted that she didn't have the guts to tell the woman had said truly meant. But, she found a different way to tell Skye's story that would help other paining parents.

The Reaction and the Reach

Millie then went forward and designed a poster and an emblem that would alert all hospital staff and visitors to the loss of a twin or other multiple in the NICU. This was meant to make all people mindful and move with sensitivity in these paternity wards. Millie had no idea just how far this would reach.

The Viral Symbol

Millie was absolutely shattered at that moment that she was reminded that she didn't have her set of twins with her, and it was a moment that she simply never wanted to experience again. She then set out to create the symbol that would later be implemented not just in the Kingston Hospital, but many others across the country and globe.

The Color Purple

Millie then began crafting purple butterflies that would be stuck onto each incubator that would indicate that the baby was one of a set of multiples in which one or more babies were lost. The reason for purple butterflies was to use a color that was suitable for both boys and girls. While butterflies were fitting in order to remember the babies that flew away. This approach would be implemented globally.

Six Symbolic Years

It's been over 6 years since the defining and devastating moment for Millie and Lewis, who have yet to let a day go by without the world seeing the impact that their baby Skye made in just 3 hours of life. But, their child lives on in more ways than in her loving parent's memories or even the purple butterflies that are now all over NICUs around the globe. Millie and Lewis placed her name on another groundbreaker that has made a sincere impact on the lives of many.

The Butterfly Effect

The family then kicked off the Skye High Foundation. The foundation aims to support the purple butterfly cards as well as other efforts to help families who have experienced heartbreak like theirs all those years ago. The foundation has also created and facilitated support groups and to place bereavement counselors at hospitals for other grieving parents who lose babies during pregnancy or birth.

Millie and Lewis have stressed the importance and the need for bereavement midwives like theirs to support and advise families in a time of such profound loss. What could've been an isolating and lonely loss turned out to have a level of council and support that helped the couple heal. What do you think about this phenomenal story and the response to it that has since affected the world?

⚠︎ Medical Disclamer

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