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Heartbroken Emily Nixon, 25, recalled how her desperately sick little girl, Darcy Roger, six, packed a lifetime of love into just five days, when Beatrice, the baby sister she had longed for, was born two weeks premature—giving them less than a week to bond before the older girl died.
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.
Remembering how Darcy was “over-the-moon" when she first learned she was to become a big sister, full-time mum, Emily—who spent five “very special" days at the local hospice with her daughter's body, saying her final farewells—said:
“She was the most special person. Darcy was so kind and the memories I have are of her when she was thinking about other people."
“We gave her some pocket money and told her she could spend it on anything she wanted and she chose some little slippers for Bea."
Now Emily and her postman partner-of-five-years, Kristian D'Rosario, 30, of Malton, North Yorkshire, England have launched a clothing brand—Love Darcy Clothing—in her memory, producing t-shirts, hoodies and bags with slogans such as 'brave at heart' and 'born to stand out' inspired by her.
Speaking to raise awareness of the wonderful work of Martin House Hospice for Children, in Wetherby, North Yorkshire, for whom the family have raised more than £3,000 ($3,667), Emily continued:
“The most devastating thing is that Darcy did not get to spend enough time with Bea, because that was the thing she was most excited about. They would have been the best of friends."
“I speak about her all the time. There will never be a time when she is not spoken about to Bea. It's important that she knows all about her sister."
“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."
Emily continued:
“Darcy was like an old head on young shoulders, we would go for walks and ask her what she was doing and she would say things like 'just admiring the view'."
Six weeks after she was born, Darcy was diagnosed with VACTERL Association, which according to Great Ormond Street Hospital, is a rare condition when a group of symptoms appear together more often than expected by chance.
These symptoms include vertebral defects, anorectal anomalies—affecting the anus and rectum—cardiac defects, trachea-oesphageal fistula, which are rare conditions of the oesophagus and windpipe, renal abnormalities and limb abnormalities.
Although no signs of what was to come were detected during pregnancy, Darcy was born with a missing radial bone in her forearm and thumb, and at six weeks old medics detected a heart murmur.
Living in Kent at the time, Darcy was referred to London's Royal Brompton Hospital where, after also finding issues with her bowel, doctors diagnosed her with VACTERL Association.
As a result, during her short life, she had 20 operations altogether, on her limbs and bowel, as well as five lots of open heart surgery, the first to close a hole in her heart and the rest to treat pulmonary stenosis, a narrowing of the heart valve which affects the functioning of the heart, requiring surgery to cut away excess tissue.
Even after having open heart surgery, within a few hours she wanted to get up and go to the playroom. That's what she was like
Kristian D'Rosario
She also had a colostomy bag until she was three years old.
Kristian, who adored Darcy and had helped care for her since she was 18 months old, said:
“We spoke to her like an adult about her condition. We wanted to make sure she was comfortable and understood what was going on."
“She was so calm about it, whenever she was in hospital she knew it was because she needed looking after."
Kristian continued:
“Even after having open heart surgery, within a few hours she wanted to get up and go to the playroom. That's what she was like."
“The main problem was that it made her tired, because her heart was working harder than it should have been. She wasn't allowed to play as much as the other children, which was really hard for her."
“If she overdid it, a few days later she would have no energy."
Kristian added:
“But, despite everything, we had been told that she would make it to adulthood. There was never any talk about her not getting to that stage."
Sadly, during the final quarter of 2018, Darcy's health took a turn for the worst and, while she was waiting for heart surgery, her parents took her to A&E five times in two months, complaining of stomach pains.
With her immune system weakened, medics thought she probably had a urine infection or a virus.
But on January 24, she blacked out while Kristian was getting her ready for school.
Taking her first to the GP, they soon found themselves being taken by ambulance to York Hospital, where her condition was monitored.
Kristian recalled:
“She had no energy. We knew she was not well because she didn't eat much of her dinner, which was her favourite, macaroni cheese, and she offered her ice cream to Emily, which was not like her at all."
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.
Emily Nixon
He continued:
“At about 4am the following day she woke up then sort of blacked out again. I ran to get the nurse and about 20 people came into the room."
“She had become breathless and was struggling for air. She was essentially having a cardiac arrest."
“The medics tried to resuscitate her and worked on her for about 45 minutes, but she didn't make it."
She was pronounced dead at 5am that morning, which was the same time Bea had been born in the same hospital five days earlier.
Emily recalled:
“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."
Emily recalled:
“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."
“Bea was in the room with us, so we were all with her. It's so devastating to think that one moment Darcy was in hospital and we did not think she was as poorly as she was and the next, our lives had been turned upside down."
A post-mortem found Darcy had died of a cardiac arrest, due to an infection that had got into her bloodstream, called a cardiobacterium. It can be present in the mouth, nose and throat, or heart valves.
The bereavement team in the hospital directed the family to Martin House Hospice for Children, where the couple were offered the chance to spend a few days with Darcy's body, which was in a temperature controlled bedroom downstairs, so they could say goodbye properly.
Emily explained:
“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 some of her and Bea to show her when she's older
Emily Nixon
“I didn't want to leave at the end of five days. We got to spend time with her and have photographs taken, including some of her and Bea to show her when she's older."
Kristian added:
“We were able to make artwork from her hands and feet."
“Knowing she was in the same place as us was really comforting."
Darcy was buried at New Malton cemetery, just down the road from the family home, so they can visit her every day.
The most tragic thing for them is knowing that Bea will grow up not knowing her big sister and that Darcy will never get to have the relationship she was so looking forward to.
When they first told her she was going to have a little sister, Darcy was so excited she went straight to school and told all her teachers.
Kristian said:
“Darcy had always wanted to be a big sister, all her friends at school had baby brothers and sisters."
“She had given us strict instructions that we were not allowed to have a boy. She desperately wanted a sister, so it was a relief to us when we found out we were having a girl. Darcy came with us to the scan and her reaction when she found out was buzzing. She was so happy."
Bea was born two weeks early on January 19 weighing 6lb 12oz.
Because she was premature, Emily and Bea spent two days in York Hospital as a precaution, before being allowed home.
Sadly, this meant Darcy only enjoyed one day at home with her before she was taken 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."
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, if that makes sense.
Kristian D'Rosario
“Darcy was very protective over 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, if that makes sense."
Kristian explained:
“It would have been Darcy's 7th birthday in August and this was the first one we had without her."
“Coming up is Bea's first Christmas, but it will be the first one without Darcy, so I don't know how we will cope with that."
“Everything is so difficult. We try to be positive and put a brave face on it because we need to keep going for Bea, but there's so much sadness for us all, too."
He added:
“Still, we are determined that Bea will grow up knowing Darcy and how much her big sister loved her."
“And, as she grows, we will see our beloved Darcy living on through her."
Visit www.lovedarcyclothing.com and www.darcy-roger.muchloved.com