Mother repeatedly ‘kept in dark’ about reason for baby’s death, inquest told

A grieving mother has told an inquest how secretive, evasive and “patronising” behaviour by NHS staff was “traumatic” and led to her spending years seeking the truth about her daughter’s death.

Jedidajah Otte told how she encountered a “stubborn refusal” by doctors and nurses at St Thomas’ hospital in London to tell her what was happening with three-month-old Aviva’s health.

The hospital insisted for 10 years that Aviva died of natural causes. However, last month it admitted that her death in January 2014 occurred as a result of contaminated feed given to her by staff, which led to her developing a deadly infection.

Otte, who is a Guardian journalist, also accused Guy’s and St Thomas’ NHS trust (GSTT), which runs the hospital, of “dishonesty”, a “lack of transparency” and “misleading” her about the outbreak of Bacillus cereus, a food-borne bacteria in the baby feed, which caused Aviva’s death.

Otte also alleged that she was “repeatedly kept in the dark” about why her daughter’s health suddenly collapsed, “discouraged” from making inquiries and “told off” for looking at Aviva’s medical notes in her desire to understand her condition.

Jedidajah Otte with Aviva’s twin sister in 2015. Photograph: Maria Moya

GSTT has denied being “dishonest” towards Otte. Two senior doctors from St Thomas’ who treated Aviva have told the inquest there was no “cover-up” of the reasons why she lost her life.

However, one of the doctors, the consultant neonatologist Dr Grenville Fox, who treated Aviva until shortly before she died, told the court on 10 September the intravenous parenteral nutrition she had received – which GSTT prepared – had caused or contributed to her death, despite the trust denying that for a decade.

Otte has made her claims in three written statements she submitted to the inquest, at Southwark coroner’s court in London. It is examining the death of three vulnerable premature babies who died in two separate outbreaks of contaminated feed. They were Aviva, and in June 2014 Yousef Al-Kharboush, also at St Thomas’, and Oscar Barker at Addenbrooke’s hospital in Cambridge.

Otte wrote: “As I felt strongly back then [in 2014], I continue to feel strongly now that I and Aviva’s father were repeatedly kept in the dark about Aviva’s condition, the circumstances of her sudden deterioration and death. GSTT staff discouraged us repeatedly from making further inquiries and I was told off on several occasions for having dared to read Aviva’s medical notes.” Aviva was one of twin girls whom Otte gave birth to in October 2013.

“Patronising sentences such as: ‘Don’t worry, Mum, baby is poorly but we are dealing with it’ were part and parcel of the daily updates and discussions that took place with doctors and nurses … It was primarily these ongoing attempts by staff to keep us, as parents, only vaguely informed that made the events we experienced on this [neonatal] unit as traumatic as I will always remember them.”

Otte added: “It was this stubborn refusal of the medical teams treating both my daughters to accurately and transparently describe their concerns, diagnoses and treatments that triggered, in the aftermath of Aviva’s death, many years of anguished, futile attempts of mine and my mother to piece together what had happened and how my daughter’s death may have been avoided.”

She, her daughters’ father and her own parents “were never convinced that her sudden, extremely traumatic death was ‘natural’ and merely a result of her prematurity, low birth weight, previous brain injury and abdominal surgery, as had been stated on the death certificate”, Otte stated.

It is also “truly astonishing” that neither Bacillus cereus nor sepsis – the condition it led to, which helped cause Aviva’s death – were mentioned on her death certificate as a cause of death and “absurd” that her neonatal discharge summary did not reference the sepsis, which is also known as blood poisoning, she added.

In a statement to the inquest responding to Otte’s claims, Fox denied her allegation of “a wider dishonesty at GSTT regarding the Bacillus cereus outbreak.”

He said: “I take the suggestion that either I, or my GSTT colleagues, have been dishonest very seriously indeed, and for the record I disagree with this suggestion.”

Staff did not know Aviva had been infected with Bacillus cereus when she died on 2 January 2014 and so did not put it on her death certificate, as a blood test taken the day before had not yet been analysed, he said.

However, his colleague Dr William Newsholme, GSTT’s head of infectious diseases, told the inquest in a statement that confirmation from the test that Aviva did have bacteria in her system had arrived several hours before she died.

The inquest has now finished. Dr Julian Morris, the senior coroner presiding, will disclose his conclusions at a further hearing on 23 October.