Grieving Mom Thinks Of A Way To Help Other NICU Parents Avoid Painful Questions

by Megan Zander
Originally Published: 

Mom starts fundraiser for purple butterfly stickers in NICUs to identify babies who are part of a multiple loss

Millie Smith was in the NICU watching over her sleeping infant daughter, Callie, when an innocent comment by another mom nearly broke her. “You’re so lucky you don’t have twins,” the mother of the fussy duo called over to Smith. But what that woman didn’t know is that Smith is in fact the mother of twins, but Callie’s twins sister Skye passed away a few hours after birth.

Smith was too upset to correct the woman. “I ran out of the room in tears and they had no idea why,” she told Babble. “I didn’t have the heart to tell them what had happened. A simple sticker would have avoided that entire situation.”

So Smith came up a solution to prevent other parents from experiencing the same heartache she felt when someone accidentally assumed she only had one child. She started a crowdfunding page called Skye’s Wish to make purple butterfly stickers for NICUs. These stickers can be used to mark the isolette of babies who are part of a multiple set where there was an infant loss. The stickers are already in place in Smith’s hospital as well as signs that read: “When visiting this Neonatal unit as either a partner, relative of friend please be aware of the butterfly logo on each cot. This represents a baby that was part of a multiple pregnancy but sadly all of the babies did not survive.”

Whether infant loss is anticipated or unexpected, it’s still devastating. Twelve weeks into her pregnancy, Smith and her partner Lewis Cann learned one of their identical twin girls, Skye, had anencephaly, a condition that affects brain development. There is no cure or treatment and most infants only survive for a very short time after birth.

Heartbroken, the couple decided to continue the pregnancy and Smith prepared for an emotional delivery.

At Kingston Hospital in the United Kingdom where Smith delivered, there are fantastic services in place for parents facing infant loss. Smith was placed in a Daisy room for delivery, which is a room where parents anticipating the loss of an infant can stay with the baby until the end. She also had the support of a bereavement midwife to help her through the difficult delivery. The midwife was there for Smith during the delivery and beyond. “She is incredible and every hospital needs someone like her. She helped me organize the funeral and everything.” Beyond the butterfly stickers, Smith hopes to use funds raised by Skye’s Wish towards expanding services like dedicated delivery rooms and bereavement midwifes for families who experience infant loss.

As the mother to twin NICU graduates, Smith’s story resonates with me. In my neck of the woods the NICU played a special musical tune when the unit lost a baby (which was just as heartbreaking to hear as you’d imagine) but there’s no way to indicate when a baby is part of a multiple set at all, let alone one where there’s been a loss.

Fortunately both of my sons survived their premature birth, but there were a few times when well meaning nurses or other parents would comment on how well one of my boys was doing or how happy I must be to head home with him without knowing that his brother was down the hall with more significant medical issues. When you’re dealing with postpartum hormones as well as powerful and painful emotions the last thing you want to do is have to explain your situation over and over to strangers.

“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,” Smith says. “It’s the hardest thing anyone has to deal with.”

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