Bristol Children's Hospital: Parents tell of death of 'perfect son'
As a review of care standards at a cardiac ward at Bristol Royal Hospital for Children finds parents were let down, one family recount the death of their "perfect son" and describe how their refusal to remain quiet caused other families to speak out.
Four-year-old Sean Turner, from Warminster in Wiltshire, died at the hospital in March 2012, six weeks after receiving corrective heart surgery.
Having been returned to Ward 32 - a specialist heart unit for children - the day after the operation, his parents, Steve and Yolanda, became worried Sean was "deteriorating".
As their concerns grew, Sean's parents asked for him to be transferred to intensive care but were told by medical staff it was not possible as he was "not sick enough".
"We started to become scared and worry about the care he was receiving. Sean seemed so unwell and nobody really seemed to be getting on top of what was wrong," Ms Turner said.
Sean had to go back into theatre as he had a build-up of fluid around his heart and on his lung and his parents expected him to go back into intensive care.
They said they were surprised when he was returned to Ward 32 instead.
Just a few days after being told their son was "not sick enough", they say, a doctor told them Sean was the "illest child in the hospital".
He vomited constantly and was unable to eat. He was so dehydrated he would grab wet wipes, intended for washing, and try to suck out the moisture.
Only when he had a cardiac arrest in his father's arms, four days after the operation, was Sean allowed to return to intensive care.
He died six weeks later.
The experience left the Turners distraught and frustrated. When a coroner ruled the hospital had not failed Sean, they campaigned for an inquiry.
In the following weeks they came to believe the hospital "didn't want to be honest" with them and accused bosses of a "cover up". This feeling was made worse when having specifically asked if there were other families who had lost children on the ward, they were told there were not.
Then they "stumbled across" the story of Luke Jenkins, from Cardiff, who died on Ward 32 a few weeks after Sean.
Yolanda Turner said: "We were just shocked that their experience on the same ward was identical to ours."
After the inquest, when Sean's case became public, the couple were "inundated" with messages.
They said about 35 families contacted them to say they too had lost a child at the hospital.
Damien Girley and Amie Fenlon's son Tommy died on his second birthday while awaiting a heart operation.
His parents said the procedure was delayed and then cancelled.
Ms Fenlon said: "We weren't told how seriously Tommy needed the operation. I'm angry.
"We should have been told all these things and it could have made a difference, and he still could be here today."
After the death of Sean, Mr Turner contacted NHS England's medical director, Bruce Keogh, via Twitter and pleaded with him to intervene.
He agreed to meet with the Turners and other concerned parents.
The Turners said after meeting the Jenkins family, they pressured the Care and Quality Commission (CQC), which made an unannounced inspection and discovered the ward failed to meet safety standards for staffing levels, training and support and patient welfare.
Mr Turner said: "We want nothing more than for Bristol to be the safest cardiac centre in this country."