Amber Milnes’s parents say they should have trusted their instincts and questioned doctors
The family of a five-year-old girl who died after having her tonsils removed have urged parents to “trust their instincts” and “speak up” if they are worried about their children undergoing surgery. Amber Milnes, from St Just in Roseland, Cornwall, underwent the procedure at the Royal Cornwall Hospital in Truro on April 5, 2023 due to sleep apnoea.
Cornwall Coroners’ Court heard Amber’s parents believed she would remain in hospital overnight after the operation as she had cyclical vomiting syndrome (CVS), a rare condition. However, Amber was discharged home hours later and began vomiting on the morning of April 6. She was admitted back to hospital that evening, having vomited about 20 times.
Amber suffered a fatal haemorrhage, likely caused by an infection in the part of her throat where her tonsils had been removed, at about 3am on April 9. Andrew Cox, the senior coroner for Cornwall, reached a narrative conclusion following a two-day inquest into Amber’s death.
He concluded: “Amber died from a known but very rare complication, catastrophic haemorrhage caused by infection after a surgical procedure, adenotonsillectomy.” Amber’s cause of death was recorded as massive haemorrhage with aspiration of blood, surgical site infection and enlarged tonsils which were removed.
Speaking after the inquest, Amber’s parents, Sereta and Lewis Milnes, paid tribute to her as a “beautiful, joyful and brave” little girl who “sparkled and shone” in their family and community. “We have listened to the evidence from all the doctors and we thank them for their honesty in explaining what happened, and where things could and maybe should have been done differently,” they said.
“As her parents, we will always feel that Amber should still be with us. She should have been allowed to stay in hospital after the surgery as we asked, even if it was just to be on the safe side, or at least she should have been admitted straight away when we called in first thing the next morning to say she had been vomiting.
“We still feel her condition wasn’t understood enough. We understand her death in this way was incredibly rare but it never, for a moment crossed, our minds that she might die from having her tonsils out. Parents everywhere will understand and we would urge other families to Remember Amber when their children face surgery.
“If surgery is needed, then do go ahead, but if you are worried, don’t be afraid to trust your instincts and speak up or ask questions, and work with the doctors. Remember that no operation is risk-free, however common it may be.”
Solicitor Mike Bird of Enable Law, who represented the family, paid tribute to Amber’s parents and their “incredible” courage. “No one expects their five-year-old child to die after having their tonsils out,” Mr Bird said. “I can’t think of a harder situation for a family to face than losing Amber after such a common operation.
“The coroner has carried out a full investigation, with evidence from the doctors and an independent medical expert, and the family are very appreciative of that. But there are still some mysteries about how Amber died, and whether if things had been done differently, her death may have been avoided.”
During his conclusion, Mr Cox said the procedure to remove Amber’s tonsils and adenoids was “unremarkable”, with Amber discharged at about 9pm that day. Her parents told the inquest they had repeatedly stated that she would need to remain in hospital overnight due to her CVS.
They described how the “horrible” condition, which Amber began suffering with aged two, would leave her violently retching and vomiting every 10 minutes for hours at a time. Mrs Milnes said she was “surprised” at the decision to discharge Amber but accepted what the doctors advised, which she described as “the biggest mistake in my whole life”.
Amber began vomiting in the morning of April 6 and her parents rang the hospital to see if she needed to be readmitted but were advised to “wait and see” whether she improved, Mrs Milnes said. She vomited about 20 times that day and her parents brought her into the hospital that evening, with Amber admitted and given intravenous medication.
The canula was found to have stopped working in the early hours of April 8 and was not resituated until 2.45pm that afternoon. Mrs Milnes described how Amber awoke in hospital at 3am and suffered a catastrophic haemorrhage, with doctors unable to resuscitate her. She was pronounced dead at 4.37am on April 9.
A post-mortem examination found an artery under the site where Amber’s tonsils had been removed was eroded by infection and had ruptured. Mr Cox said he was unable to say whether Amber’s death could have been avoided if she had remained in hospital overnight, or if she had been given anti-sickness drugs at an earlier stage.
“In my view, her death was due to the operation providing a means for infection to gain access to the artery that ruptured,” he concluded. During the inquest, ear, nose and throat (ENT) surgeon Simon Carr, of Sheffield Children’s Hospital, said he had reviewed Amber’s case and had not identified any shortcomings in her care that would have changed the outcome.
However, the coroner noted that neither Kel Anyanwu, the surgeon who performed the operation on Amber, nor the anaesthetist present, had knowledge of CVS. He said: “I am of the view that Mr Anyanwu should have spoken to paediatric colleagues pre-operatively as he knew little, if anything, about CVS.
“This may have impacted a decision to discharge, or readmit earlier. I accept that as Mr Anyanwu didn’t fully understand the implications of CVS, it had to follow that the parents could not have provided fully informed consent. “That is clearly undesirable.”
Mr Carr told the hearing it was appropriate for Amber’s tonsils and adenoids to have been removed and “reasonable practice” for her to be discharged that day. “I concluded that, having reviewed the records, I didn’t identify any shortcomings,” Mr Carr said. “I think it is just an extremely unfortunate, very sad case.”
In a statement issued after the inquest, Dr Merry Kane, the chief medical officer at Royal Cornwall Hospitals NHS Trust, expressed sympathy with Amber’s parents. “Our hearts go out to Amber’s family; the death of a child is utterly devastating,” Dr Kane said.
“We have all learned from Amber’s tragic death. We remain committed to learning and ensuring that every child and family receives the highest standard of care. Since Amber’s death, we have introduced new guidelines on caring for children with obstructive sleep apnoea following adenotonsillectomy. We will continue to do everything we can to increase awareness of CVS.”