Maternal PKU – Why I'm Having A Burrito Delivered To The Labour Ward

In my seventh month of pregnancy, like many mothers I’m looking forward to the moment when I can finally eat some of the foods I’ve missed.

I’ve not only had no sushi, no blue cheese, reduced caffeine and only occasional alcohol, I’ve also forsworn or seriously limited my intake of meat, fish, carbs including bread and pasta, cheese, beans, nuts, seeds, even soya-based meat replacements. I’ve carried scales with me to restaurants, sent dietary essays to friends who have hosted me, and done blood tests at home three days a week.

I’m not just a control freak; I have Phenylketonuria, or PKU, a genetic dietary disorder classed as a rare disease which affects approximately one in ten thousand people in the UK. I’m deficient in the enzyme that digests an amino acid called phenylalanine, common to high protein foods, so I restrict my intake of those foods and use supplements to get the nutrition I and now my growing baby need.

Every child born in this country is tested for PKU. Most people forget about it when it doesn’t show up for their baby. The NSPKU describes the risks it carries as follows: “Sustained, high blood levels of phenylalanine can harm the brain and without early and effective treatment children with PKU can develop learning difficulties and developmental delay.”

I was ‘on diet’ from birth to the age of 25 and thanks to the efforts of my parents this never felt like as great a hardship as it might have, but it was difficult for them and made me aware that I needed to be more independent about diet and food at an early age. The obscurity of the condition saw even family members try to persuade me that ‘a wee piece of fish’ would do no harm (it would); the supplements I took made a school friend sick when he insisted I let him try them, and as for turning down all of the food so carefully prepared by friends’ mothers at children’s birthday parties… My mum and I ran the gauntlet of seeming judgemental and difficult in an age when gluten intolerance and coconut milk belonged only in the health food…

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