Best practice guide for raising a newborn baby with PKU
Reaching your child’s full potential: the importance of diet in your child’s development
Managing Phenylketonuria (PKU) is about ensuring your child gets the best chance to develop normally through careful management of blood Phenylalanine (Phe) levels.
PKU is treated with a low- Phe diet and a special nutritional supplement or substitute, containing no Phe. During your baby’s first few months, this will be in the form a special milk formula, which contains all the special protein, vitamins and minerals your child needs for development.
To begin with, your baby may be given just the Phe-free formula to allow blood Phe levels to fall more quickly. This will only be for a brief time. If you’re breastfeeding, it may be necessary to express your milk to maintain its flow.
Once blood Phenylalanine (Phe) targets are reached, your baby will be given a special formula, usually before each breastfeed. On its own, breast milk contains too much Phe for babies with PKU. The precise amount of Phe your baby can tolerate is likely to be different to another baby with PKU. Your PKU specialist and dietitian or nutritionist will be able to help you manage the right Phe intake for your child.
Feeding your baby needn’t be as daunting as it may seem at first. Your dietitian or nutritionist will help you. As you begin your PKU research, you’ll find a range of valuable resource materials. For information about other PKU websites and resources and where to buy dietary products go to our PKU directory
Making solid progress: adapting the diet to your child’s development
Your understanding of your child’s blood Phenylalanine (Phe) level management will develop over time.
As your child begins to eat solid food around the age of six months, you’ll be given advice on what to prepare. Learning to accept new tastes and textures may take several months. But over time, your child will be introduced to a range of low protein food. Your dietitian or nutritionist will remain in close contact during this time to deal with any questions.
Just as your child is discovering different kinds of food, you’ll begin to learn about how to count protein. Foods are measured and the amount of protein your child consumes will need to be calculated using a special list provided by your PKU team. Along the way, feel free to raise any concerns you have, especially if your baby is unwell or refusing to feed.
Gradually, your child will eat more solid food and rely less on infant formula, or breast milk. There will also be changes to your special Phenylalanine (Phe)-free formula, referred to as the ‘supplement’ or ‘substitute.’ Your dietitian or nutritionist will decide on the type of supplement or substitute your child is given. Regular blood tests will help monitor blood Phe levels.
Children born with PKU must continue their special diet throughout childhood to prevent damage to the developing brain.
Medication may become part of their PKU management as children grow. In adult life, maintaining blood Phe at a low level and within a target range is essential to brain performance and emotional stability.
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See PKU diet and treatment options for your newborn baby and Laying the foundations for a healthy, independent future to know more about solutions and what to expect in the future.
