Millie Smith and Lewis Cann were not surprised they were expecting twins, they run in Smith’s family. Two weeks after learning the happy news though, the couple received a blow when they were informed one of the babies had anencephaly. This is a neural tube defect where the brain does not form correctly. “During the scan, the doctor didn’t say anything. I was very excited and loved seeing the little babies, but she was silent. Both Lewis and I immediately knew there must be a problem,” Smith says. The prognosis was that the baby named Skye would die within seconds, minutes at most, after birth. “Skye was somewhere we knew she would always be, that we could look up at the sky and remember our baby,” Smith explains. Although, they had months in advanced knowing what would happen, nothing could prepare them for the heartbreak.
She had a C-section at the Kingston Hospital in the United Kingdom with a bereavement midwife in the room.
Skye defied the odds as she lived for three hours. “We were cuddling Skye when she passed away. This was the worst moment in our lives” Smith says. “I have never ever felt heartbreak like that before. But I am proud that she fought for so long to spend time with us.”
The nurses were understanding and aware of the family’s loss but within four weeks no one mentioned Skye.
The new parents were unaware of Smith’s loss.
Smith decided to make sure no other parent would ever have to go through that again.
This explains to nurses, doctors, and other families that the baby was part of a multiple birth and one of the newborns did not survive.
The sticker may seem simple but to grieving parents, it means the world to them.
Smith and Cann have also set up the Skye High Foundation to provide bereavement counselors for parents who have lost a baby during pregnancy or after birth. She hope this foundation extends globally.
“After going through this myself I feel there is a lot more that could be done to help parents cope with the loss. Support groups, counselling, even things like the planning of the funeral, additional daisy room (special room allowing you time with your baby away from the labour ward) and much much more. All these things cost money that no family should have to pay for,” she says her reason behind setting up the Skye High Foundation.