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Mother, 25, reveals how her daughter, six, died just five days after her second child was born

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A heartbroken mother has revealed how she spent five days with the body of her daughter, six, after she died, thanks so a ‘cold bedroom’ at a children’s hospice. 

Emily Nixon, 25,  from Malton, North Yorkshire says her daughter 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.

Born with a rare disorder called VACTERL Association, which affects different systems in the body, 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 this year.

After Darcy passed away, Emily and her partner spent five days with Darcy in a temperature-controlled bedroom downstairs at the Martin House Hospice for Children, so they could say goodbye properly.

‘I didn’t want to leave at the end of five days,’ she said. ‘We got to spend time with her and have photographs taken, including some of her and Bea to show her when she’s older.’

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Emily Nixon, 25, from Malton, North Yorkshire gave birth to baby Bea (right) just five days before her eldest Darcy, six (left), died from a rare illness. Pictured: Darcy and Bea's last photo before Darcy died

Emily Nixon, 25, from Malton, North Yorkshire gave birth to baby Bea (right) just five days before her eldest Darcy, six (left), died from a rare illness. Pictured: Darcy and Bea’s last photo before Darcy died

Emily Nixon, 25, from Malton, North Yorkshire says her daughter Darcy Roger, six,packed a lifetime of love into just five days, when Beatrice, the baby sister she had longed for (pictured together)

Remembering how Darcy was 'over-the-moon' when she first learned she was to become a big sister, full-time mum, Emily 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

Emily Nixon, 25, from Malton, North Yorkshire says her daughter Darcy Roger, six, (right together) packed a lifetime of love into just five days, when Beatrice, the baby sister she had longed for (left together) was born two weeks premature – giving them less than a week to bond before the older girl died

Remembering how Darcy was ‘over-the-moon’ when she first learned she was to become a big sister, full-time mum, Emily 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 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.

Emily, who has raised more than £3,000 for Martin House Hospice for Children, in Wetherby, North Yorkshire, 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.

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 this year

'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' Emily said

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 this year

Emily and her postman partner-of-five-years, Kristian D'Rosario, 30, of 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. Pictured: Darcy's funeral

Emily and her postman partner-of-five-years, Kristian D’Rosario, 30, of 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. Pictured: Darcy’s funeral

‘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.

‘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, a rare condition when a group of symptoms appear together more often than expected by chance.

Emily, who has raised more than £3000 for Martin House Hospice for Children, in Wetherby, North Yorkshire, 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. Pictured: Kristian with Bea and Darcy

Six weeks after she was born, Darcy was diagnosed with VACTERL Association, a rare condition when a group of symptoms appear together more often than expected by chance. . Pictured: Kristian with Darcy

Emily, who has raised more than £3000 for Martin House Hospice for Children, in Wetherby, North Yorkshire, 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.  Pictured: Kristian with Bea and Darcy

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.

Six weeks after she was born, Darcy was diagnosed with VACTERL Association, a rare condition when a group of symptoms appear together more often than expected by chance. Pictured with Bea

Six weeks after she was born, Darcy was diagnosed with VACTERL Association, a rare condition when a group of symptoms appear together more often than expected by chance. Pictured with Bea

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.

‘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. 

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' Pictured: Bea in a hoodie from Love Darcy Clothing

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’ Pictured: Bea in a hoodie from Love Darcy Clothing

‘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.

‘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.’

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.

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 (Pictured in hospital)

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 (Pictured in hospital)

A post-mortem found Darcy (pictured)  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

A post-mortem found Darcy (pictured)  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

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.

‘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.

When Emily first told Darcy she was going to have a little sister, she 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.' Pictured: Bea visiting her grave

When Emily first told Darcy she was going to have a little sister, she 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.’ Pictured: Bea visiting her grave

‘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.

A note Darcy wrote about meeting Bea

A note Darcy wrote about meeting Bea

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‘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 so they could spend more time with Darcy. 

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.

Kristian added: ‘We were able to make artwork from her hands and feet.

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. Pictured: Darcy at school

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. Pictured: Darcy at school

‘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. 

When Emily first told Darcy she was going to have a little sister, she 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.

What is VACTERL Association?

An ‘association’ in medical terms is a group of symptoms that appear together more often than would be expected by chance.

VACTERL is an acronym made up of the first letters of the main symptoms that make up the condition:

  • Vertebral defects
  • Anorectal anomalies
  • Cardiac defects
  • Tracheo-oesphageal fistula/oesophageal atresia
  • Renal abnormalities
  • Limb abnormalities  

It’s not known what causes VACTERL association, but usually all the symptoms happen very early in pregnancy.

 Doctors believe it’s not genetic as most children born with VACTERL association do not have any close relatives with similar symptoms. 

It affects all races and males and females in equal numbers, affecting about 1 in 10,000 to 40,000 births.  

Vertebral defects affect between 60 and 80 per cent of babies born with VACTERL association to varying degrees. 

It means the vertebrae may be misshapen or fused or missing or there may be additional vertebrae in place. 

According to Great Ormond Street hospital, anorectal anomalies means that the anus has not formed properly and may be is either closed over or very narrow so faeces cannot be passed from the body in the usual way. This affects between 60 and 90 per cent of babies born with VACTERL association. 

Between 40 and 80 per cent of babies with VACTERL association will have a cardiac or heart defect.

But the severity of the defect varies from child to child. A ‘hole in the heart’ are most commonly seen in VACTERL association, as well as a heart defect called Tetralogy of Fallot.

Tracheo-oesophageal fistula/oesophageal atresia affect between 50 and 80 per cent of babies born with VACTERL association. This is where part of the oesophagus is joined to the trachea (windpipe) or where a short section at the top of the oesophagus (gullet or foodpipe) has not formed properly so is not connected to the stomach. This means food cannot pass from the throat to the stomach.

Renal abnormalities can vary in severity and may include an absent kidney or kidneys that are formed abnormally such as a horseshoe kidney or cystic kidneys. 

This happens to around 50 to 80 per cent of babies born with VACTERL association.

Limb abnormalities affects around 50 per cent of babies born with VACTERL association. It is often the thumb or the forearm and hand that are affected, which are missing or underdeveloped.

Other abnormalities have been reported in babies born with VACTERL association – all babies are given a thorough physical examination to check for any other problems. 

 Source: Great Ormond Street Children’s Hospital

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.

‘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.

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. 'Darcy was very protective over her. She wanted to be the only one to look after her'

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. ‘Darcy was very protective over her. She wanted to be the only one to look after her’

'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. 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' Emily said

‘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. 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’ Emily said

‘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.

‘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.

‘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.’

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