More people could die from protein shakes, coroner warns after boy, 16, suffered brain damage and passed away three days after consuming drink when doctors failed to test for raised ammonia levels
- Rohan Godhania died in August 2020 due to an undiagnosed urea cycle disorder
A coroner has warned more people could die from protein shakes after a teenager suffered ‘irreversible brain damage’ and passed away three days later when doctors failed to test for ammonia.
Rohan Godhania became unwell having consumed the drink and died after advice from neurologists suggesting he be tested for ammonia were ignored.
The 16-year-old’s condition deteriorated and he tragically died two days later in August 2020, having suffered from undiagnosed ornithine transcarbamylase (OTC) deficiency – a urea cycle disorder which prevents the breakdown of ammonia.
Now, senior coroner for Milton Keynes Tom Osborne written to NHS England and the Food Standards Agency urging the use of ‘prominent’ warnings on labels of protein products, as evidence suggests there is ‘a risk that future deaths will occur’.
He has also urged for the classification of 16 to 18-year-olds to be reviewed, after a paediatric neurology professor raised concerns the teenager had not received ‘quality of care’ as a result of confusion over whether Rohan should receive paediatric or adult care.
Ammonia is a waste product made by the body in the digestion of protein, however OTC allows ammonia to accumulate, rising to toxic levels where it affects the central nervous system.
In a Prevention of Future Deaths report, senior coroner Tom Osborne revealed ‘matters giving rise to concern’ that had arisen throughout Rohan’s inquest about the treatment of teenagers within the NHS and guidance for testing for ammonia.
One requiring ‘immediate attention’ was regarding the ‘lack of guidance’ for testing for ammonia levels in patients who ‘present in extremis with an unknown cause’ in emergency departments.
Mr Osborne wrote: ‘Timely and accurate diagnosis is essential in such cases to ensure appropriate treatment and prevent unnecessary deaths.
‘The guideline should include clear protocols for conducting ammonia tests, interpreting the results and making informed clinical decisions based on the findings. The guidance should be disseminated to all emergency departments and healthcare facilities.’
What is ornithine transcarbamylase deficiency (OTC)?
Ornithine transcarbamylase (OTC) deficiency is a rare genetic disorder where a sufferer has a complete or partial lack of the enzyme ornithine transcarbamylase (OTC).
It is extremely rare and estimated to affect one in 50,000 to 80,000 people.
Symptoms of OTC deficiency can include vomiting, refusal to eat, lethargy and coma.
OTC is one of six enzymes that play a role in the break down and removal of ammonia from the body. This process is known as the urea cycle.
The lack of this enzyme means ammonia can build up – which can then to the central nervous system through the blood.
OTC deficiency is often treated as an emergency when sufferers cannot tolerate a normal diet and show symptoms.
Treatment usually given is a high glucose energy drink.
Source: NHS Scotland
Continuing his report, Mr Osborne said evidence throughout the inquest meant there was still ‘a risk that future deaths will occur’.
The other main concern the coroner reported was the ‘lack of clarity and consistent guidance across the NHS regarding the appropriate classification of teenagers aged 16-18.’
He wrote: ‘The question of whether they should be treated as paediatric patients or adults is leading to confusion and potential disparities in the care provided.
‘I consider that this should be urgently reviewed by NHS England and if necessary the guidance on age classification updated ensuring that all healthcare providers adhere to a unified approach emphasising the importance of consistent and appropriate care for this age group.’
It comes after the inquest heard in June that Finbar O’Callaghan, professor of paediatric neurology at the Institute of Child Health, University College London, was critical of the decision by a specialist hospital – known as a tertiary centre – not to accept a referral for the 16-year-old to their paediatric neurological team because the West Middlesex Hospital had classified him as an adult patient.
Professor O’Callaghan said that Rohan – like other patients his age across the country – had ‘fallen between two stools’ and as a result did not receive ‘quality of care’, explaining: ‘I am critical of the fact that if he (Rohan) goes down that adult pathway he was refused admission to the tertiary hospital because he was 16 years of age.’
He added: ‘If he (Rohan) was treated as a paediatric patient I think it is more likely that he would have received a correct diagnosis more rapidly and that he would have had a smoother pathway.’
Mr Osborne said supplements were ‘easily accessible to the general public’ but current labelling failed to ‘adequately inform consumers’ about the potentially fatal dangers posed to individuals with urea cycle disorder.
The inquest in the city heard Rohan consumed a ‘high protein’ drink and was admitted to West Middlesex Hospital on August 16, 2020, where his hyperammonaemia and OTC deficiency were not diagnosed.
Tragically, after advice from neurologists instructing he be screened for ammonia was ignored, the youngster, from Ealing, west London, died two days later after suffering ‘irreversible brain damage’.
In his conclusion, Mr Osborne said failing to carry the test was a ‘lost opportunity’ and may ‘on the balance of probabilities have prevented his death’.
Last month, Rohan’s mother Pushpa Godhania, 57, called on the NHS to test for ‘silent killer’ ammonia in emergency departments, claiming that under current protocols a ‘lot of people are dying unnecessarily’.
‘High protein supplements and drinks are easily accessible to the general public, yet their labels fail to adequately inform consumers about the potential dangers posed to individuals with urea cycle disorders, such as Ornithine Transcarbamylase (OTC) deficiency,’ he wrote.
‘This genetic disorder can lead to severe medical emergencies, requiring immediate medical intervention to prevent life-threatening complications.
‘This disorder can be triggered by the sudden increased ingestion of protein.
‘Consideration should be given as to whether the labels should prominently display a warning about the potential risks for individuals with an undiagnosed urea cycle disorder and include clear and concise information on symptoms of this and the importance of seeking immediate medical advice.’
In conclusion, he added: ‘In my opinion there is a risk that future deaths will occur unless action is taken and I believe NHS England and the Food Standards Agency have the power to take such action.
He added that NHS England and the Food Standards Agency are under a duty to respond to the report by October 2.