Walk into almost any modern Neonatal Intensive Care Unit (NICU) and you’ll see it. It’s small. Usually just a simple sticker or a laminated card taped to a plastic incubator. The purple butterfly neonatal symbol is one of those things you don't notice until you have to notice it, and then it becomes the most significant thing in the room.
It’s heavy.
For most people, a butterfly signifies life or transformation. But in the quiet, sterile hallways of a maternity ward, that specific shade of purple tells a much different story. It marks a loss that most of us can't even fathom. It represents a "butterfly baby"—one half of a set of multiples where one sibling survived and the other did not.
Where the purple butterfly neonatal symbol actually came from
This wasn't some corporate initiative dreamt up by a hospital board. It started with Millie Smith and Lewis Cann. Back in 2016, at Kingston Hospital in the UK, Millie was pregnant with identical twins, Skye and Callie. Tragically, Skye was diagnosed with anencephaly, a condition where the brain and skull don't develop properly. She wasn't going to survive long after birth.
When the girls were born, Skye lived for just three hours.
Millie was in the bereavement suite, mourning Skye while also trying to care for Callie, who was in the NICU. Then, another parent of twins—unaware of Millie's loss—made a casual comment about how lucky she was to have two. It was an innocent remark, but it felt like a physical blow. Millie realized there was no way for anyone to know what she was going through. She needed a way to signal her grief without having to say the words out loud over and over again.
She designed a purple butterfly.
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She chose purple because it’s a color often associated with both royalty and mourning, and the butterfly felt right for a life that was beautiful but fleeting. Along with her partner, she founded the Skye High Foundation, and the symbol soon went global. Hospitals in the US, Australia, and across Europe started adopting it because it solved a problem healthcare workers didn't even realize was so pervasive: the "invisible" loss of a multiple.
Why this specific symbol is different from other hospital codes
Hospitals love codes. We have Code Blue for cardiac arrest and Code Pink for infant abduction. But those are for staff. The purple butterfly neonatal sign is for the community inside the ward. It tells the nurse who just started their shift to tread lightly. It tells the cleaning crew why a mother might be crying even though she’s holding a healthy baby.
It creates a "circle of protection" around the family.
Honestly, the NICU is a weird place. It’s a mix of extreme joy and soul-crushing terror. You have parents celebrating a baby finally reaching five pounds right next to a family saying goodbye. It’s a lot to handle. The purple butterfly acts as a silent advocate. It says: "I am a grieving parent. Please be kind."
The nuance of loss in multiples
Losing one baby while the other survives creates a psychological phenomenon that psychologists sometimes call "intertwined grief." It’s messy. You feel guilty for being happy that one baby is breathing, and you feel guilty for being sad while your surviving baby needs you.
Research published in journals like The Lancet has highlighted that the psychological impact of losing a twin is uniquely complex. Parents often feel like they are living in two parallel universes. One where they are changing diapers and celebrating milestones, and another where they are planning a funeral. The purple butterfly neonatal symbol acknowledges that both of those universes exist at the same time.
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How hospitals implement the butterfly system today
It’s not just about the sticker. If a hospital says they use the "Butterfly Protocol," it usually means they’ve trained their staff on how to talk to these families.
- They place the sticker on the cot or incubator of the surviving sibling.
- They might put a matching sign on the door of the mother’s room in the postpartum ward.
- It alerts the palliative care and chaplaincy teams to check in more frequently.
- It ensures that staff don't accidentally ask "Where is the other one?" during shift changes.
Some hospitals, like the Royal Manchester Children’s Hospital, have been very vocal about how this tiny piece of paper changed their unit's culture. It moved the conversation from "clinical management" to "compassionate care."
It isn't just for twins
While the Skye High Foundation started this for multiples, the usage has sort of evolved. You might see a purple butterfly neonatal tag in situations where a family has lost a child previously, or if a baby is in a life-limiting situation. However, most practitioners try to keep it specific to the loss of a multiple to avoid confusion.
If a baby is an only child and passes away, hospitals usually have other symbols—like a white rose or a leaf—to mark that loss. The butterfly is specifically for the "survivor" dynamic.
What you should do if you see one
If you’re a visitor or another parent in the NICU and you see that purple butterfly on someone’s incubator, don't feel like you have to go over and give a speech.
Usually, the best thing you can do is just be mindful.
If you're chatting with that parent in the lounge, maybe don't complain about how tired you are. They would give anything to be tired for two babies instead of one. You don't need to acknowledge the butterfly explicitly unless they bring it up. It’s a shield, not a conversation starter.
The criticism and limitations
Nothing is perfect. Some parents have actually said the butterfly makes them feel "branded" by their tragedy. They want to focus on the baby that is there, and seeing the symbol of the baby who isn't can be a constant, painful trigger.
Ethicists and bereavement counselors sometimes debate whether these symbols should be "opt-in" only. Most hospitals now ask the parents' permission before putting the sticker up. It’s a delicate balance between providing support and forcing a label on someone who just wants to survive the day.
Practical steps for parents and healthcare providers
If you are a parent facing this, or a nurse looking to bring this to your unit, here is how the process actually works.
For Parents:
Check with your hospital's bereavement coordinator. Most major medical centers have them. If they don't use the purple butterfly neonatal symbol, you can actually bring your own or ask them to print one from the Skye High Foundation website. You have the right to set the tone for your own care. If the sticker helps you feel seen, use it. If it feels like a burden, tell them to take it down.
For Healthcare Professionals:
Education is more important than the sticker itself. If you put the butterfly up but your staff doesn't know what it means, you've failed. Run a "Lunch and Learn." Explain the origin story. Ensure that the symbol is used consistently across the labor and delivery, NICU, and postpartum units.
The purple butterfly neonatal symbol is a small tool for a massive problem. It doesn't fix the grief. It doesn't bring a baby back. But it does something very human: it acknowledges that someone is missing. In a place as busy as a hospital, that acknowledgement is sometimes the only thing that keeps a family from feeling completely invisible.
How to support the cause
If you want to help expand this, you can look into the Skye High Foundation in the UK or organizations like Share Pregnancy & Infant Loss Support in the US. These groups provide the physical stickers and the training materials that make these protocols possible.
The goal isn't just to have more stickers on incubators. The goal is to create a healthcare environment where the trauma of losing a multiple is treated with the specific, nuanced care it deserves. It’s about making sure no mother ever has to explain, through tears, why she only has one baby in her arms when she was supposed to have two.
The purple butterfly is a silent promise that the hospital remembers, even when the world outside has moved on. It’s a way of saying that even though one life ended before it truly began, that life still mattered enough to change the way we provide care.
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To implement this effectively in a clinical setting, follow these specific actions:
- Download the official "Butterfly Project" briefing pack to ensure the symbol is used correctly and respectfully.
- Establish a clear communication chain so that when a multiple loss occurs, the information travels from the delivery room to the NICU immediately.
- Ensure that bereavement resources—like memory boxes or photography services—are offered alongside the visual symbol.