PARENTS CALL FOR ANSWERS OVER DARCIE’S DEATH
ADORABLE Darcie Roberts was just 18 months old when she died suddenly at her home in Caerphilly.
The toddler, who was diagnosed with Down’s syndrome at birth, was found lifeless in her bedroom by her heartbroken mum.
Five years on from her tragic death, the family say questions still remain about the NHS care their child received and why she was taken from them so soon.
“I still haven’t had closure as I don’t really know what happened to her,” said Darcie’s mum Kayleigh Roberts.
“She was fine the night before. We were out the back in her special chair and she was as well as she could have been.
“Then when I went into her room the following morning and saw she wasn’t breathing. I just started screaming.
“I rang up my husband Gareth who had gone to work, but luckily he picked up his phone. It was all so sudden.
“When she died my world came crashing down. I haven’t been the same since.”
Despite undergoing blood tests and scans during pregnancy, doctors failed to spot that Darcie had Down’s syndrome until she was delivered at the Royal Gwent Hospital in Newport on January 6, 2012.
Medics also discovered the child had three holes in her heart which would need to be closed through major surgery.
The baby was quickly transferred from the Royal Gwent to the University Hospital of Wales in Cardiff once the seriousness of her heart condition was known.
“That whole time is just one massive blur,” said Kayleigh, 32, from Caerphilly.
“I knew the pregnancy didn’t feel quite right. I was having a lot of pains which I didn’t get with my first child. But nothing was picked up on any of the tests I did.
“When she was born I was told that Darcie would have heart failure by three months old. I hadn’t even got my head around the fact that she had Down’s syndrome, let alone the problems with her heart.”
After she was discharged, Kayleigh said Darcie suffered with bronchiolitis, was unable to swallow her milk properly and had a very rapid heartbeat.
“She was admitted to hospital with heart failure at three months old, just like the doctors said she would,” Kayleigh said.
“Her liver was enlarged which apparently is a sign of heart failure.
“I remember being able to see her heart beating through her skin. That’s how fast her heart rate was.”
Kayleigh said that doctors at the University Hospital of Wales (UHW) in Cardiff decided that before the heart procedure, Darcie would need an emergency bowel operation after spotting a blood clot.
But Kayleigh claims the procedure had a detrimental impact on her daughter’s health and led to her suffering brain damage.
“She was hitting all her milestones before the procedure. She was smiling and doing everything a baby should be doing.
“But after that procedure she started having seizures all the time. They put it down to the fact she had Down’s syndrome, but I didn’t think that was right.
“She couldn’t even cry after the bowel operation and stopped smiling altogether.”
Two weeks after the bowel surgery, Darcie was taken to the Bristol Royal Hospital for Children so surgeons could close the holes in her heart.
But after the eight-hour operation she took another turn for the worse.
“It was just a horrendous time,” she said.
“Darcie was given a CT scan before the heart operation because an MRI scan wasn’t available.
“We believe if an MRI scan had been carried out instead, then they would clearly have spotted a clot on her brain and wouldn’t have gone through with the procedure.
“Those two major operations caused a lot of damage to her brain.
“She ended up suffering with so many seizures that I couldn’t cwtch her anymore and couldn’t feed her like a proper mother should.”
She claims they were sometimes not made aware of arrangements around Darcie’s care by staff at UHW in Cardiff.
“We had to go outside when the doctors were doing their ward rounds and discussing her care. I didn’t feel that was right,” she said.
Despite the problems, Darcie remained stable for many months and was showing signs of progress. But on July 15, 2013, Darcie died. An inquest later found she died of natural causes.
“Every day I still question what happened that day,” Kayleigh added.
“I’m now anxious about everything. I don’t like to leave the house, I’m scared to sleep and I just fear everything will go wrong.”
Despite the harrowing ordeal, the family have raised more than £5,000 in Darcie’s memory through charity events.
Some £4,000 of this total was raised by staff, pupils and parents of Ysgol y Castell in Caerphilly, where Kayleigh works.
All the money has been donated to the Caerphilly Children’s Centre which offered medical, therapy and support services to Darcie.
Kayleigh said she believes Darcie would still be alive today if doctors at UHW had spotted the clot on her brain before taking on two major procedures.
A spokesperson for Cardiff and Vale University Health Board said: “We understand the family are still grieving the loss of their daughter Darcie, and as a health board we are committed to listening to our patients and their families.
“We are working together with Darcie’s family to formally address the concerns made to us.
“We would encourage Mrs Roberts to make further contact with the concerns team.”