SCBU's biggest baby

Kataraina continued her stay in SCBU, and it was strange. She was a giant among all the other babies, who were in intensive care for being born prematurely, and they reallly were tiny wee things. The hardest part was that she looked like nothing was wrong - she wasn't coughing, feverish, choking, crying. She had no physical deformities, and yet there she was, being tube-fed her milk, while we all waited for a doctor to shine some light on her condition.
And on she slept.

It was by Thursday the following week that specialists decided to get a sample of her CSF (cerebro-spinal fluid) to see if it was a particular condition.

On Friday the meeting was held. There must have been around 20 family members, the paediatrician from SCBU, a neurologist and a person she would be in contact with for the rest of her life - metabolic specialist Dr Callum Wilson.

It was that day that he informed the family of Kataraina's condition - Non-Ketotic Hyperglycinaemia (NKH), a genetically inherited metabolic disorder that causes raised glycine levels, which can cause coma-like states, brain damage and seizures. He added that it was incurable, though medication could be started to bring her glycine levels down and hopefully she would wake up, breathe on her own and be able to move.

It was bittersweet - to finally know what was wrong, but that it would affect her forever.