There are many hard lessons you are forced to learn when you give birth prematurely, but when my twins were born at 25 weeks gestation in 2012, one of the most difficult was realizing just how often parents of multiples end up losing one (or more) of their babies. It's the kind of heartbreak that is hard to even imagine, and one where there really isn't anything to say that could make it better, but after living through it themselves, parents Millie Smith and Lewis Cann have set out to help bereaved parents who have lost a child in the neonatal intensive care unit with some very meaningful butterfly cutouts, according to Today. Purple butterfly stickers might be coming to hospitals, and they could have a big impact on the way grieving parents are supported in the NICU.
When Smith and Cann learned they were expecting twins late in 2015, they were super excited. But they soon learned that one of their identical twin girls had anencephaly, a defect that prevents the brain from forming properly. Their hearts broke when they were told that their baby would likely only live for minutes after birth, and at 30 weeks gestation, Smith gave birth to her girls, Skye and Callie, via emergency C-section. With the assistance of a special bereavement midwife, the new parents said goodbye to Skye, who lived for three hours following her birth, and who even got to spend a moment with her twin sister before she passed. Smith told Today that she was able to hold Skye while she died, and said,
This was the worst moment in our lives. I have never ever felt heartbreak like that before. But I am proud that she fought for so long to spend time with us.
Although Smith said that the NICU staff were supportive and sensitive of her loss while she and her partner were still on the unit with their remaining daughter, Callie, there was one moment that made her painfully aware of how much worse the already-difficult NICU experience can be for parents who are also grieving a multiple loss. Smith told Us Weekly that, only a few days after Skye's death, another NICU mom of twins who didn't know about Skye told Smith that she was "so lucky [she] didn't have twins." Smith said, “up until this point I hadn’t cried in front of any of the parents. But that was it, I ran out of the room in tears.”
Any parent who has spent time in the NICU with their child or children will tell you that connecting with other parents can be a delicate balancing act. On the one hand, it is incredibly helpful to know that you aren't alone, that there are other people who know exactly how difficult what you are going through really is — and chances are, you see each other everyday anyway. But on the other hand, it can be excruciating to hear and see so many heartbreaking stories, to not know what is OK to ask or say, and to do it all when you are already feeling incredibly emotional and overwhelmed, often just barely functioning as you hope that your baby will get better and come home. Unfortunately, Smith had to experience the painful downside of that reality — that someone could make an unintentionally-devastating comment — but with the help of some strategically-placed purple butterfly stickers, what happened to Smith might not have to happen to anyone else.
The Skye High Foundation's purple butterflies are designed to be placed on the inside of incubators of babies who were once part of a multiple pregnancy. Without divulging any further details, or placing the burden on the parents to explain, the butterfly lets nurses, doctors, visitors, and anyone else in the unit know that the parents have experienced a devastating loss, and reminds them to be sensitive about it.
It's a wonderful, simple, and very powerful idea, and Smith and Cann told Us Weekly that it is catching on faster than they could have anticipated:
So far about 115 hospitals have contacted me wanting to implement the idea. I thought it would just be our local hospital!
The British couple haven't indicated whether they've received interest from hospitals outside of the U.K., but as word of the Skye's Wish project spreads, the butterflies could hopefully become a recognized part of NICU care, providing a new way to support grieving parents of multiples in an already-heartbreaking situation.
In addition to the purple butterflies, Smith and Cann are currently working to raise £10,000 to support local bereaved families in the NICU, and hope to eventually build a charity big enough to support families across the country. Anyone wishing to donate to the foundation can do so at the couple's crowdfunding page.
As for Skye's sister, Callie, Smith tells Romper that she is now eight weeks old, and has graduated from the NICU to come home with her overjoyed parents:
We absolutely love having her home with us...even with the lack of sleep! I wouldn't change it for the world! She is, luckily, a healthy baby and will lead a normal, healthy life.
Although Smith and Cann have experienced more heartbreak than any young family should ever have to go through, from it they've been able to find a way to help countless families. And that has meant that Skye has left a pretty remarkable legacy behind her, too.