When Millie Smith and Lewis Cann found out they were expecting a baby, they were overjoyed. As there was a history of twins in Millie’s family, she had a strong feeling that she was going to give birth to two little ones, and her instincts were right. The ultrasound confirmed that she was indeed expecting twins, but the doctors told them that one of the babies had a very small chance of survival.
ragically, one of their daughters was born at 30 weeks with anencephaly, a serious condition that affects the development of the brain and spinal cord. They learned that their precious baby had only moments or hours to live.
Knowing this, Millie and Lewis wanted to give her a name before they said goodbye. They chose the name Skye. Millie explained: “We felt she needed a name before she arrived. Knowing she wouldn’t be with us for long, I wanted her to have a name in those fleeting moments”.
The name “Skye” symbolized a connection to a place they could always remember when they looked up to the sky. “We held Skye close as she died. It was the most heartbreaking moment of our lives, but I’m proud that she fought to spend that time with us.” Skye only lived for three hours, a brief time filled with love while her parents cherished her beauty and presence.
After her death, Millie and Lewis were supported by a “bereavement midwife” and given access to a “Daisy Room”, a special room where parents could spend time with their baby before and after death. However, after Skye was gone, her memory seemed to fade; no one spoke of her, leaving Millie feeling like her daughter had never existed, which made her angry.
“Most of the nurses knew what had happened, but as the weeks went by, people stopped mentioning Skye. Other families around me had no idea about our loss”, Millie recalls.
While her other daughter, Callie, was still in the NICU, another mother who knew nothing about Millie’s situation remarked how lucky she was not to have twins. “None of the other parents knew about Skye, and that innocent comment almost broke me. I left the room in tears but didn’t have the heart to explain”, Millie said. “A simple sticker could have prevented this.”
This experience inspired Millie to design a sticker for incubators to mark the loss of one or more babies in a multiple birth. She chose butterflies to symbolise the ‘flown away’ babies and used the colour purple, which is suitable for any gender.
From this idea grew the Skye High Foundation, which promotes the Purple Butterflies initiative and helps raise awareness in hospitals around the world. The foundation also offers a range of purple butterfly merchandise.
“Although I can’t prevent these situations from occurring, I believe the more support we can provide through initiatives like the stickers, the better it will be for others who suffer this loss. It’s an incredibly tough journey”, said Millie. Today, her surviving daughter Callie is seven years old.
These Deadly Insects Attack Victims At Night, Killing Them Quietly Or Leaving Them With A Lifelong Infection
Emiliana Rodriguez’s childhood memories are a blend of joy and sorrow, intertwined with the haunting specter of a silent killer lurking in the darkness. Growing up in Bolivia, she vividly remembers evenings spent watching her friends play soccer under the moonlit sky. But one fateful night, the game was abruptly halted by the tragic passing of a player, a victim of the insidious disease known as Chagas.
For Rodriguez, the incident cast a long shadow of fear over the night. In the folklore of her upbringing, Chagas was depicted as a monstrous presence that emerged under the cover of darkness, claiming lives without warning. This narrative became all too real when she learned that her friend had succumbed to this silent and silenced disease, one of the thousands who perish annually from its grasp.
Now, at 42 years old and living in Barcelona for over two decades, Rodriguez still grapples with the specter of Chagas that haunts her past. “The terror would grip me at night”, she confides. “There were times when sleep eluded me, fearing that I might never wake up again.”
Her own confrontation with the disease came to light eight years ago, during her first pregnancy. The revelation of her status as a carrier sent shockwaves through her, evoking memories of her childhood trauma. “I felt paralyzed with fear”, she recalls. “The thought of what might happen to my unborn child kept me awake at night.”
Yet, despite the looming threat, Rodriguez embarked on a journey of treatment to safeguard her child from the same fate. Thanks to medical intervention, her daughter emerged unscathed, spared from the clutches of the silent killer that had haunted her family’s history.
Rodriguez’s story is not unique. Across the globe, individuals like Elvira Idalia Hernández Cuevas of Mexico find themselves thrust into the unfamiliar terrain of Chagas disease. For Idalia, the journey began with a routine act of altruism, donating blood. Little did she know that this act would expose her to a hidden danger lurking within her own community.
“When I first heard the diagnosis, I was terrified”, Idalia recounts. “I had never even heard of Chagas before, let alone imagined that I could be its victim.”
Her experience echoes a broader reality, one where awareness of Chagas remains dangerously low, even in regions where the disease exacts its heaviest toll. Originating in the Americas, Chagas has since spread its reach to other continents, ensnaring millions in its silent grip.
In the face of this silent epidemic, efforts to combat Chagas are hindered by a lack of awareness and resources. Outdated treatments offer little solace to those afflicted, with medications often proving toxic and ineffective, particularly for newborns.
Yet, amidst the darkness, there are glimmers of hope. Champions like Emiliana Rodriguez and Elvira Idalia Hernández Cuevas are raising their voices to break the silence surrounding Chagas. Through advocacy and awareness campaigns, they seek to shine a light on this neglected disease, urging communities to confront the monster lurking in their midst.
As the world grapples with the challenge of eradicating Chagas by 2030, the road ahead remains daunting. But with each voice raised in solidarity, the hope for a future free from the shackles of Chagas grows stronger.
In the battle against this silent killer, knowledge is our most potent weapon. By arming ourselves with awareness and understanding, we can confront Chagas head-on, ensuring that no more lives are claimed by the darkness.
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