A four-year-old girl born with severe health issues died after a problem with her feeding pump in the middle of the night, an inquest heard.
Amelia Louise Edwards from Sutton Weaver, Runcorn, had a rare genetic condition which meant her blood sugar needed to be maintained at a certain level during the night. However she died on April 8, 2021, despite the best efforts of her parents and paramedics and medics at Whiston Hospital and Alder Hey Children's Hospital to save her.
It later emerged her feeding pump had not been working despite appearing to be functioning, and no loud "bleep" had sounded to alert her parents to any problem.
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Amelia had been found "unresponsive and floppy" by her mum at their home on the morning of April 8. Paramedics were called and she was taken first to Whiston Hospital in Rainhill and then on to Alder Hey for treatment, where she died at 11.55am on April 8, 2021 Cheshire Live reports.
An investigation found there had been a build-up of pressure in the machine from being switched on and off, with Amelia not getting the nutrition she needed as a result.
Coroner's officer Daniel Galvin said Amelia's parents Lisa and Stephen Edwards had no concerns regarding her medical care and treatment. They had both checked on Amelia before going to bed on the evening of April 7, with the machine appearing to be working and the night feed having been switched on at 7.30pm.
Lisa said: "At approximately 6.45pm I took her up to bed and followed the normal evening routine. I got her ready for bed and then started to set up the feed for the night. I set the rate slightly faster initially and then reduced the rate when I went to bed."
She said she left Amelia to settle for an hour or two and then Stephen came up to swap the bottle. At approximately 10pm she went up to bed and checked on her, with the feed due to finish at 8.15am the following day.
"I noticed she sat up and looked at me but she wasn't making any sounds. She was still sitting up when I left but Stephen said he checked on her when he was going up to bed between 10.30pm and 11pm and Amelia was asleep. The machine was on and charging and there was no beeping coming from it."
On entering Amelia's room in the morning, Lisa said: "The first thing I did was to look at her and I noticed she was still sleeping. I came downstairs to get her medication."
She then gave her the medication and "let Amelia sleep for a little bit longer while I made breakfast" before going back upstairs at around 9.05am and trying to wake her up.
She picked her up and went to put her down to change her nappy when she noticed her foot was twitching. Stephen then looked at the pump and the feed bottle and said she had not had her feed as the bottle was still full.
Stephen then rang for an ambulance and Lisa applied glucose gel to Amelia's gums as the glucose could be absorbed by her body in this way. They tried to set the feeding pump up and could see the feed was not going through the tube and Amelia remained unresponsive.
They were able to get it working again, with paramedics arriving and taking over the care of Amelia. They gave her a glucose injection and said they would have to take her to hospital. She had started to vomit and they were concerned about her airway and so decided to head straight to the nearest hospital, Whiston.
Lisa told the inquest she was thought to have had an undiagnosed syndrome of some sort which could explain the combination of conditions she suffered. She was diagnosed with hyperinsulinism at three weeks old and started on medication, with medics liaising with Great Ormond Street Hospital in London.
She said Amelia was the smallest child in the North West to have been diagnosed with the condition. She also had global developmental delay and was not meeting any of her milestones.
Amelia developed severe gastro-oesophageal reflux, with fluid entering her airways and so was fed with a feeding tube and dieticians developed a feeding programme so that Amelia's parents could take her home and oversee her care themselves. Amelia's blood sugar needed to be maintained and enough nutrition given without causing her to vomit.
There was no suggestion that these conditions would affect Amelia's life expectancy, although she might have needed further treatment later in life and the family had been trained by Alder Hey on how to use the feeding pump.
They had continued using the same design of pump and had practical training sessions with someone at the hospital, along with leaflets and some troubleshooting advice if there were any issues with it. Lisa had requested a new pump as a dial on the front of the device had come loose.
She said: "I remember thinking it would be good to have a spare machine in case we were ever in the same position."
She added: "I used the feeding pump on such a regular basis... The device would start beeping on completion of the feed and would continue until the dial was turned off."
"If Amelia was going to school I would set the rate and dose in advance and her teacher would just have to start the feeding pump then."
Home Office forensic pathologist Dr. Johnson said Amelia had a number of long-standing medical issues, having been born at 37 weeks gestation with a number of features of Russell-Silver Syndrome, which is a rare genetic condition that causes poor growth and feeding issues such as gastro-oesophageal reflux.
Amelia had congenital hyperinsulinism and severe reflux and was peg fed as she was unable to swallow.
The causes of death were given by Dr. Johnson as 1a hypoxic ischaemic encephalopathy, which is a brain injury, 1b profound hypoglycemia, and 1c congenital hyperinsulinism, which is a condition where the body makes too much insulin.
Detective Inspector Andrew Wallace from Cheshire Police told the inquest they were made aware of the "sudden and tragic death of Amelia". He said there were no suspicious circumstances and no evidence of any third-party involvement or any culpability regarding Amelia's death.
The equipment appeared to have been switched off a number of times and had re-baselined. He said the motor on the pump had continued to turn and the LCD screen update gave the impression it was working properly but "sadly it was not delivering feed."
Abbott Laboratories said they had around 130,000 such devices and this appeared to be an isolated case. An appropriate regulatory agency had been notified and the company had since liaised with the NHS and they were aware an alert had been sent to all users with fresh guidance around the use of the equipment.
Assistant Coroner Heath Westerman added that a combination of user errors in terms of use of the equipment had ultimately led to the deterioration of Amelia's health but there was "no evidence of any wilful or malicious intent in respect of this" with the equipment appearing to users to have been working properly.
"There is no evidence of negligence on behalf of any organisation or any individual."
Cheshire assistant coroner Heath Westerman said: "I offer my sincere condolences and sympathy to Amelia's parents at such a very sad and tragic death of a young lady who had many troubles but was given much love and was so well cared for and now sadly much missed."
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