In addition to the recommendations for all females who are planning to become pregnant, eg:
You also need to follow a strict low phe diet both before becoming pregnant and during pregnancy.
The best outcomes of pregnancy are seen with mothers who have their blood phe under control prior to becoming pregnant and in the early stages of pregnancy.
Having phe levels controlled before pregnancy means your baby is protected right from the start. The heart and brain start developing soon after conception. Keeping the phe levels controlled in the early weeks of pregnancy is important to protect the baby’s heart and brain as they start to form.
You may not know you are pregnant until you miss your first or second menstruation which relates to the 4th or 8th week of pregnancy.
At 6 weeks the heart may be beating, and the brain and spinal cord are developing. The foetus will be the size of a pea.
At 8 weeks the limb buds are developing, and the foetus will be the size of a kidney bean.
By 12 weeks the organs of the foetus including the brain are formed. The foetus will be the size of a lemon.
When the low protein diet is followed, you are just as able to have healthy babies as women without PKU.
The low protein diet should be started and the phe levels should be in the lower target range for pregnancy before trying to conceive a baby (before trying to get pregnant), this is known as a “planned pregnancy”.
Most metabolic centres ask to be told about 6 months before you want to start trying for a baby, therefore a reliable form of contraception should be used. This is to make sure they can organise for extra dietary training and support, set up the supply of low protein foods and protein substitute, and help you make the necessary changes to your diet to reduce the blood phe into the target range for preconception and pregnancy.
Blood phe levels should be stable in the target range for preconception and pregnancy for 2-3 months before it is safe to stop contraception. Each person is different, and your dietitian can tell you more about what this might be like for you.
The low protein diet together with the protein substitute lowers the blood phe and provides all the nutrients you and your baby need to be healthy.
Protein substitutes provide protein without the phe (or are very low in phe). Taking enough protein substitute with vitamins and minerals during pregnancy provides your baby with the right nutrients to grow. Nutrients like protein, iron, vitamin B₁₂, essential fatty acids (DHA) and folic acid are important for the baby’s growth and the development of their heart and brain. Your dietitian will recommend how much protein substitute and any extra supplements that are needed. It’s important to take the full amount that your dietitian recommends to get everything that you and the baby need.
Speak to Your Dietitian and Try the Protein Substitutes Available For You:
Always check with your dietitian before you make any changes to your protein substitute.
Essential tips to make taking your protein substitute a success:
Speak to your metabolic team if you are still struggling to take all your protein substitute.
Specially manufactured ow protein foods are especially important during preconception and early pregnancy when your intake of natural protein is likely to be very limited. Low protein foods provide important energy, that keep you full and provide variety.