Published on 14 Nov 2012

What lessons can be learned from Hayley Fullerton’s death?

Hayley Fullerton had just turned one when she died from heart failure after undergoing corrective surgery for a condition she had been born with.

According to the family’s solicitor Birmingham Children’s Hospital have now admitted full liability after her parents and grandparents repeatedly warned staff that her condition was deteriorating.

It is a tragedy that has been compounded – yet again – by a system that prevails in the National Health Service, in which families have to fight until they are beyond exhaustion to be listened to.

Paula Stevenson – Hayley’s mother – and her family fought for three years for answers. Still it is not over for them

While the hospital has admitted mistakes were made, the coroner has today returned a narrative verdict only finding “serious failures but not amounting to neglect”.

Hayley was born in Belfast at the Royal Victoria. Her serious heart condition had been detected 22 weeks into the pregnancy. Shortly after birth she underwent surgery but her parents were warned she would need more.

Her condition meant blood could not get from her heart to her lungs.

So on 12 October 2009 she was admitted to Birmingham Children’s Hospital – a centre of excellence and one of the few centres worldwide capable of performing the complex operation.

The operation went well and 17 days later she was transferred from intensive care to a general ward – ward 12. Her mother says that while she had been apprehensive, Hayley appeared to be improving.

But she was then moved to ward 11 and from then on, the family says, problems emerged. She was placed in cubicle one, furthest away from the nursing station. Ms Stevenson said she believed she was being punished because she had been reluctant for Hayley to be moved.

This has been denied by the hospital.

About five days later, though, the family felt Hayley’s condition was deteriorating. She developed breathing complications but these were not treated. And it is at this point the story becomes all too familiar.

Hayley’s mother says she was accused of crying wolf when she pleaded with staff to help. She says she even became so desperate she tried “bribing” a nurse with a £100 shopping voucher to pay her daughter more attention.

She said that over a period of seven days nurses ignored her pleas and that she was made to feel like a paranoid parent.

The coroner for Birmingham and Solihull, Aidan Cotter, did not entirely support this in his findings but he did find a series of failures:

Nobody asked why she still needed oxygen so long after her surgery, why a chest x-ray was not ordered earlier and when it was, why it took so long to review, why physiotherapy was not started as soon as a doctor ordered it?

He also said there was a failure to fill in the medical charts properly and accurately and consultants did not check these. Nor was it explained to the family why Hayley was put into isolation after concerns about swine flu.

Crucially, he asked why Hayley was not referred back to paediatric intensive care on 9 November. While he says nobody knows if she would have recovered or even if she would have been admitted – but that chance to know was denied and Hayley died from heart failure on 11 November 2009 .

He found 10 failures but he decided that none of them was a “gross'” failure. To the amazement of the family.

The hospital held its own inquiry and among other things found that there was a hierarchical culture amongst staff and a misunderstanding about when a patient could be referred back to intensive care.

The trust said today in a statement: “When Hayley died , we recognised that some of our care fell below our usual high standards and for this we offer a heartfelt apology for the distress caused.

“We have taken all the steps possible to learn from this. We have gone beyond the recommendations of our investigation and improved the way we do things to ensure that no children or families experience anything like this again.”

They do not say what these improvements are. But the family are sceptical. However, they have some ideas themselves on how to stop another family being ignored.

They call it Hayley’s Early Warning System (Heal). It’s a website they’ve set up to help parents ask for a second opinion and, quite frankly, be listened to.

Today Hayley’s mother said she had not had time to grieve for Hayley. She said the hospital needed to show more humanity and compassion.

Hayley’s grandfather Edward Stevenson, who was there throughout Hayley’s time in hospital and has been through the entire inquest, said today that with all the evidence put in front of him, the coroner should have reached a far stronger verdict.

“We will carry on as far as we can to secure that no other family has to come through what we have had to endure.”

But, sadly – again – the same story has been heard from Mid-Staffordshire Trust and, indeed, from numerous other stories I have covered.

Families do not go to the law because they want money. They go because they want changes made.

It grieves me but not anywhere near as much as it grieves the families of those involved.

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3 reader comments

  1. Busy mum says:

    This sounds familiar. My baby has hypoplastic left heart syndrome and made it to the ward after a month in intensive care. For a week I had concerns that she was very irritable and difficult to settle. Every time the ward round came I raised my concerns however they refused to do blood tests and told me that I hadn’t had enough sleep and was over worried. It took for her to stop breathing before they took action and it turned out she had a wound infection. I had asked them several times to check her wound but they kept telling me she was fine. Thankfully she pulled through. I can’t imagine how devastating it must be for Hayley’s family.

  2. Kaelaine says:

    It was good to read the article and see the video. I have spent the last year with my 17 year old dguhater going through the unknown illness maze. She also felt nauseated but never got sick. Her biggest issue was passing out without any warning. She would pass out 3-7 times a week. Needless to say this wrecked havoc with her school life and life in general. We started out going through a neurologist who was sure she was having seizures. I kept pushing to find an answer. Two GPs, two neurologist and one cardiologist later we finally found a cardiologist, Dr. Hannon, out of Pitt Hospital in Greenville, NC who heard the symptons and gave the diagnosis of Neurocardiogenic Syncopy. The diagnosis was confirmed with a tilt table test. He explained the condition to us and is following the same meds that are being used at the Mayo Clinic. Every system in her body that is controlled by the autonomic nervous system has been affected. Her inability to sleep, digestion, circulation, tiredness, brain fog and the passing out have been extremely hard on her. She is getting better but it has been a long hard year for her. Both POTS and Neurocardiogenic syncope are disorders of the autonomic nervous system. At times the two seem more similar than dissimilar. It is so illusive and the symptoms keep changing. Hopefully Keegan will continue to get better.

  3. John Jones says:

    It is such a sad story that could and should have been prevented. Hopefully lessons will be learned and cultures of hierarchy will lessen as they clearly lead to a lack of communication which results in a low standard of treatment which in the worst case scenario (like the one in the article) can lead to death. My condolences and wishes go out to the family.

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