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Last year my  grandson Lucas was born, when he was 2 days old my daughter noticed there was something wrong. He was rushed into NICU where they found that he was in a coma and having seizures.  The doctors ran blood tests and luckily for us one of them was an ammonia test which showed he had dangerously high levels of ammonia in his blood.  The hospital contacted the Evelina Children's Hospital and an emergency transfer was arranged.  When he arrived there he was admitted to PICU where he was diagnosed with Citrullinemia.

Those first days were horrendous.  Before he was transferred my daughter and partner were told Lucas would probably not survive the journey, and when they did arrive were then informed that as he was so small inserting the needle for the procedure that was needed to cleanse his blood could also kill him.  Luckily he is a strong little lad and pulled through, the Evelina were amazing and after being sedated for about a week Lucas was taken off the ventilator and slowly but surely went from strength to strength being allowed home after about a month.

So what is Citrullinaemia? It is a metabolic disorder of the urea cycle.  This means that when Lucas has protein his liver is unable to turn the ammonia that is made as the body breaks it down into urine and clear it from the body, so it builds up in the blood causing brain damage and eventually death.  This is now controlled by medication and a very strict low protein diet.  Unfortunately as Lucas's ammonia was very high it has caused some brain damage and although at the moment he is reaching all his milestones we do not yet know how this will affect him in the future. 

Metabolic support uk are a charity that are raising awareness of these disorders and give support and advice to the parents and families of those affected.

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