Emily Nixon, 25, was left devastated when little Darcy died just five days after the birth of the baby sister she had longed for.
Born with a rare disorder called VACTERL Association, which affects different systems in the body, brave Darcy had endured 20 operations during her short life and was awaiting heart surgery when she contracted the infection which killed her on January 24.
Emily, from Malton, North Yorkshire, and her postman partner-of-five-years, Kristian D’Rosario, 30, were able to spend a further five days with her body in a temperature-controlled room to say their goodbyes.
They took photographs together and made “artwork” from moulds of Darcy’s hands and feet.
She was pronounced dead at 5am that morning, which was the same time new baby sister Bea had been born in the same hospital five days earlier.
Recalling that day, Emily said: “Darcy had been sat up talking to me about playing a few hours earlier. Then, in a flash, she was gone. I remember it clearly, I stepped back to let the medics work on her and she was very much aware of what was going on.
“I remember she said, ‘Where’s my mummy?’ She wanted me to be in front of her. The moment she passed away she was looking right into my eyes, like she knew and didn’t want to leave without seeing me.
The moment she passed away she was looking right into my eyes, like she knew and didn’t want to leave without seeing me
Emily Nixon
“She said right beforehand, ‘I want to go home, Mummy.’ Kristian and I have spoken about that moment and whether she meant go home to her house, or that she wanted to go to heaven.
“We think maybe she had had enough. She’d had that many operations in her short life that maybe it took too much of a toll on her body.”
Mum Emily has said the experience was “comforting” and when it was time to say her final goodbyes to Darcy she did not want to leave.
She said: “When the hospice mentioned taking her there I was not sure if I could sit with her for five days.
“I didn’t think I’d be able to do it, but as soon as we walked into the hospice, it felt so calm. I didn’t want to leave at the end of five days.
“We got to spend time with her and have photographs taken, including of her and Bea to show her when she’s older.”
The early arrival of Darcy’s sister Beatrice, born two weeks premature on January 19 weighing 6lb 12oz, meant the two sisters could meet before Darcy’s death.
After the birth, Emily had to spend two days in York hospital with Beatrice – so Darcy was only able to spend one special day with her little sister at home before she was admitted to the same hospital.
Kristian said: “We always say that Bea came two weeks early, so she had the chance to meet her big sister.
“Darcy was very protective of her. She wanted to be the only one to look after her.
“Bea came with us when Darcy was admitted. She was really excited to have her baby sister there. When she was feeling okay she would sit up and stare at her, but she had no energy to be able to cuddle or hold her.
“The hardest thing about having Bea is that everything is so bittersweet. Everything that is a first for her is also a first for missing Darcy.”
What is VACTERL Association?
VACTERL Association is a rare disorder affecting multiple organ systems.
VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities.
People diagnosed with the condition typically have at least three of these characteristic features.
Defects in the bones of the spine (vertebrae) are present in 60 to 80 percent of people with vacterl association.
These defects may include misshapen vertebrae, fused vertebrae, and missing or extra vertebrae
60 to 90 percent of individuals with the condition have narrowing or blockage of the anus (anal atresia).
Meanwhile, heart (cardiac) defects occur in 40 to 80 percent of individuals, with cardiac defects ranging in severity from a life-threatening problem to a subtle defect that does not cause health problems.
50 to 80 percent of people with vacterl association have a tracheo-esophageal fistula, which is an abnormal connection (fistula) between the oesophagus and the windpipe (trachea).
Kidney (renal) anomalies occur in 50 to 80 percent of individuals with the disorder and affected individuals may be missing one or both kidneys or have abnormally developed or misshapen kidneys, which can affect kidney function.
And limb abnormalities are seen in 40 to 50 percent of people with vacterl association – these abnormalities most commonly include poorly developed or missing thumbs or underdeveloped forearms and hands.
Some of the features of the condition can be subtle and are not identified until late in childhood or adulthood, making diagnosis of this condition difficult.
Darcy was born with a heart murmur, bowel problems and a missing bone in her forearm and thumb, and had 20 operations and five open heart surgeries in her short life.
Despite her acute symptoms, she was expected to make it to adulthood – but her condition started deteriorating in late 2018.
In January, she blacked out as she was getting ready for school and died from a cardiac arrest – triggered by an infection – the next morning.
The most devastating thing is Darcy did not get to spend enough time with Bea, because that was the thing she was most excited about
Emily Nixon
Emily said: “The most devastating thing is Darcy did not get to spend enough time with Bea, because that was the thing she was most excited about.
“The house is full of pictures and it feels like there is a connection between them.
“If you put a picture of Darcy in front of Bea, she smiles like she knows who she is.”
Kristian added: “We are determined that Bea will grow up knowing Darcy and how much her big sister loved her.”
The parents, who have raised more than £3,000 for Martin House, have now launched a clothing brand in Darcy’s memory.
Kristian told Gazette Herald: “We had been thinking of setting up a business for a couple of years and following the death of Darcy we were inspired to do it in her memory.
“Her confidence and zest for life motivated us to follow our dreams and passion and to enable Darcy to live on forever through Love Darcy Clothing.
“Every slogan on our clothing is inspired by Darcy herself, whether that be phrases she used to say or words we feel encompassed Darcy’s personality.”
You can find more information on the brand at Love Darcy Clothing and you can donate on their fundraising page here.
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