About Me

Hertfordshire, UK
I am a very lucky Mum to two beautiful daughters, known here as Moomin and Gremlin. My second gorgeous girl, Gremlin (above), has PKU (Phenylketonuria) and has introduced us to a whole new world! This blog is intended to record our journey with regards it, particularly focusing on food and eating.

Tuesday 20 April 2010

A bit of history about us- diagnosis

I had never heard of PKU before. I mean I had 'heard' it in as much as the midwife explaining what the heel prick test was checking for when Gremlin (and Moomin too for that matter) was 5 days old but I hadn't really been listening in all honesty. I first properly listened to the letters PKU when Gremlin was 2 weeks old and we had a knock at the door late on Friday night from the on-call midwife. She explained that Great Ormond Street Hospital (GOSH) had been trying to call us all day and had been unable to reach us, so this poor gentle midwife had been sent out to deliver the news in person.

I cried. Daddymin's eyes went very wide.

He phoned Dr Lara at GOSH there and then on the midwife's instruction. She explained a bit about Phenylketonuria and that we needed to get Gremlin to GOSH the very next day to start treatment. She told us that we really shouldn't but she knew we would google the minute we got off the phone, and that if we did we should absolutely not worry about the words 'brain damage'. Of course we googled, found the words 'brain damage' and worried a lot.

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