The importance of ammonia testing

We support measures to prevent hyperammonaemia

On the 15th of August 2020, after consuming a protein shake, 16-year-old Rohan Godhania suffered with abdominal pain and vomiting on the Saturday afternoon.  The next morning, he woke up confused and was taken to West Middlesex University Hospital by ambulance. No diagnosis was made, and his condition deteriorated. Sadly, Rohan died two days later.

Months later until it was discovered that Rohan’s death may have been prevented by carrying out an ammonia test; something recommended at the time by specialists at Charing Cross Hospital who were contacted for advice in Rohan’s treatment.  

This revelation came after the recipient of a liver donated from Rohan presented to hospital experiencing symptoms including seizures. A biopsy of the donated liver revealed that Rohan had undiagnosed ornithine transcarbamylase (OTC) deficiency. This condition causes hyperammonaemia, which is build-up of ammonia in the blood that can lead to seizures, coma, brain damage and death if left untreated – which is what happened in this tragic case.  

An inquest into Rohan’s death concluded that the lack of an ammonia test was “a lost opportunity to render further medical treatment that may, on the balance of probabilities, have prevented his death”. The coroner issued a prevention of further death report which highlights the issues surrounding Rohan Godhania’s preventable death and makes recommendations as to the actions that must be taken to ensure future deaths are prevented.  

The coroner’s report made the following recommendations to NHS England, NHS Improvement and The Food Standards Agency relating to hyperammonaemia:

Ammonia testing: Guidelines 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. 

Warning labels on high protein foods/drinks/supplements:  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. 

Metabolic Support UK support the community of people at risk of hyperammonaemia and have many reports of patients who have experienced adverse events due to the lack of, or a delay in, testing.

In September we will be releasing the results of our comprehensive survey into the experiences of communities that are at risk of hyperammonaemia to add their voices to this campaign for change. 

 Metabolic Support UK strongly echo the calls to action raised by the prevention of death orders. We stand with Rohan Godhania’s family at this difficult time and will drive forward the change needed to reduce harm to our rare disease community. 

Metabolic Support UK. 
Your Rare Condition. Our Common Fight.

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Statement written by Jonathan Gibson, Policy and Public Affairs Officer

Hi, I’m Jonathan and I work as the Policy and Public Affairs Officer for Metabolic Support UK.

My background is in genetics and global health and I’ve also worked for the NHS within a busy biomedical science laboratory for over four years undertaking the analysis of samples to ensure you receive the right treatment and diagnosis.

I act as an activist and key partner with our communities to elicit change, utilising policy, data and research to develop creative campaigns with measurable goals to ensure action is taken to improve the lives of people living with inherited metabolic disorders.

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