Journey Of The Purple Butterfly: NICU
Welcoming a child into the world is very special moment for any parent. The experience of entering the unknown zone of parenthood, uncertainty of what follows and finally the wonder and amazement at one’s own child’s birth is something that every mother goes through. Right from the day of conception to the first time they hold their crying little bundle of joy, the journey is wondrous but yet is just the beginning.
The birth of a child is always a gift, but the birth of twins is an extra special. With twice the excitement, enjoyment, the diapers, the sleepless hours and unsolicited advice from everyone around.
But what happens when one of the twins doesn’t make it? Should the joy of having one child compensate the loss of the other? The amount of grief and sadness that the parent, especially the mother, goes through is unfathomable.
Since the 1970’s, the rate of giving birth to twins has steadily increased. But, what we need to understand is that premature deliveries are common amongst twin or multiple births and sadly increase the risk of mortality in the infants. The shocked parents are caught between the joy and sadness of having only one healthy baby in their arms.
Being in shock, grief stricken and not knowing how to carry on about the situation is a big challenge to the mother.
Sensitive situations like this must and always be handled with great care because loosing a baby even though they haven’t been in the world for very long, is painful. The bond between the mother and the child is invisible but very strong.
How would it feel to know that you’re carrying two lovely, innocent babies and that one of them will not survive for more than a few hours after you give birth to the twins? The fact that a child had a baby sister or a baby brother that has passed away could be easily be forgotten by the hospital staff or people around. But, in such cases it will hurt the sentiments of the parents. That was the exact occurrence, which Milli Smith had to face.
The young couples from Surrey, England- Millie Smith and her husband, Lewis Cann, were excited, and not surprised when they discovered during Smith’s nine-week check-up that she was carrying twins. Even though twins run in her family, there had not been a set of twins where both of them survived. Twelve weeks into the pregnancy, the couple’s fears were confirmed. They learned that one of the twin daughters, whom they had named Skye, would not survive for more than an hour past birth due to a brain condition known as anencephaly—where the skull does not properly form, leaving the brain exposed.
Moderately pre-term at 30 weeks of pregnancy, Millie gave birth in Kingston hospital, UK. Surprisingly, Skye cried like a normal newborn would. Instead of the few seconds that Millie feared, Skye lived for three hours, giving her parents time to love her and but sadly passed away in her father’s arms.
Later, when a mother in the next bed was trying to soothe her twins turned to the Milli in the room, and said “You’re so lucky you haven’t got twins..” It was a seemingly innocent statement. But it was one that broke Milli Smith’s heart. Because she was the mother of twins — but only one of her twin baby daughters had survived longer than three hours after birth.
There should be a way to let everyone know that the infant in the cot is a sibling of one or more babies from multiple births who did not survive.
This was the starting point of the PURPLE BUTTERFLY. The butterfly symbolizes the babies that flew away.
It could be something simple to honor the memory of the baby or babies who died, at the same time also letting others know about the loss. It could save lots of families from having to go through such painful and embarrassing situations.
“It’s a symbol of healing for the family and a reminder that we are thinking of them,” said Breen, a gynecologist at Massachusetts General Hospital. “It’s also a reminder to staff to be mindful of our language and in how we approach families, facing such situations.”
In May 2017, Mass General Hospital for Children introduced the Purple Butterfly Project to honor the lives of babies who were part of a multiple pregnancy and passed away. The Project is a non-profit organization started by Lewis Cann and Millie Smith from the United Kingdom, who lost a twin shortly after birth.
New Zealand is a world leader in neonatal care with even babies born at 24 weeks gestation (16 weeks early) also were able to be saved that go on to have normal and fulfilling lives
However, in a very small number of cases, not all babies make it. For example, over 1,000 babies are cared for, in the Wellington Neonatal Intensive Care Unit (NICU) each year. Of these, less than 20 pass away.
Although medical professionals are very confident about medical care offered, they are struggling with the emotional side of this and are not aware of – how to approach or handle these scenarios.
The Butterfly Project helps us, the medical staff, to recognize the surviving twin and yet not forgetting the one that flew away.It provides awareness about the acknowledgement of the loss, providing emotional support, provide appropriate information and continuity and help them in ‘Memory-Making’.
Even though it is too painful to remember, the angels that flew away are too precious to forget, let us try and make this process a little more purposeful and better.