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Healthy PKU Pregnancy


About PKU
About Maternal PKU
Healthy PKU Pregnancy
PKU and Genetics
Newborn Baby’s Health
PKU Nutrition & Recipes!
PKU & Pregnancy Resources
Maternal PKU Research Study

How strict must my diet be to have a healthy pregnancy?

Women with PKU should keep their blood Phe levels between 120-360 µmol/L (micromoles per liter), which is sometimes also described as 2-6 mg/dL (milligrams per deciliter). To maintain this very low level, your diet must be carefully planned and monitored. The amount of Phe-restriction and special formula needed varies from woman to woman, and nutritional counseling is very important if you are considering getting pregnant, or already are pregnant.

If I’m pregnant and have PKU, how can I gain the proper amount of weight to grow a healthy baby?

If you are pregnant and have PKU, then you should gain weight like any other mother-to-be. To gain the right amount of weight, you may need to include foods high in calories but low in protein. You can boost your weight by eating foods that are low in protein but are not “low fat” or “low cal”.  Try adding such foods as butter, mayonnaise, non-dairy creamer, canned frosting, salad dressing, and vegetable oils.  Low protein products, such as special cookies, pizzas, and baked goods are also good sources for calories.

The hormones of pregnancy may change your appetite or make you nauseous. You might have to try different foods, or try taking the formula in different ways, such as bars, drink mix, capsules, or tablets.  If you are having difficulty taking the formula during your pregnancy, or having difficulty with nausea and vomiting, contact your nutritionist or metabolic doctor.  They can work with you to find a way to maintain good nutrition during your pregnancy.

Have other women with PKU become pregnant and had babies?

In the USA today there are about 5,000 young women of childbearing age with PKU which they have successfully treated and managed. They can conceive and deliver a baby like other women who don’t have PKU. About 300 women with PKU give birth every year.

As a pregnant woman with PKU, what are some difficulties I might face?

  • Your strict PKU diet and daily intake of formula takes time and planning, and can be frustrating on an everyday basis.
  • It may be hard to follow the diet and take the formula in social situations, particularly in restaurants.
  • Nausea and vomiting can be common in early pregnancy and may make it more challenging to stay on diet and consume all the formula you need.
  • You’ll have to make time for more than the usual number of health visits, with nutritionists, metabolic specialists, and obstetricians or midwives.

Who can help me with the challenges of PKU and pregnancy?

Since having PKU adds challenges to being pregnant, you can to turn to people in your life for extra support and resources.

Your partner: Talk to your partner about the challenges you face, and give them this guide to read.  Talk about ways your partner can help you stay in metabolic control before and during your pregnancy. Helping you stay on diet is an opportunity for your partner to participate in healthy parenting, even before you get pregnant!

Metabolic clinic: Your blood will be monitored once or twice a week at your metabolic clinic, and the nutritionist, nurse or doctor there will help you modify your diet and discuss challenges you face.  Be sure to have regular visits at your metabolic clinic both before and during your pregnancy.  This way you’ll be able to get ongoing support and information from your health care providers.

Your obstetrician or midwife: Go to regular visits with your obstetrician or midwife, both before and during your pregnancy.  Let them know how you’re managing PKU, and keep them up-to-date on any special issues you are facing, such as nausea, vomiting, weight-gain, anxiety, etc.

Friends & family: Other people in your life, such as friends, family members, and co-workers, can support you throughout your pregnancy.  Let them know about the diet challenges that lie ahead for you.  They can cheer you on and help make your life easier when it comes to decisions about what and where to eat.

Remember SAM as a way to help you through your pregnancy:

S – for Social Support from your partner, friends, family, and co-workers

A – for keeping a positive Attitude towards your PKU treatment and pregnancy

M – for Manageability, getting the resources to manage your diet and maintain metabolic control. This includes having medical insurance.

Here are some additional resources to help you handle the challenges of PKU and pregnancy:

The challenges of having a healthy pregnancy with PKU can be time-consuming and frustrating. But, pregnancy is a wonderful experience, and worth the effort! Try not to let the stress of staying in metabolic control take away the joy of bringing a new life in the world.

Maintaining a strict diet and taking formula is necessary for your baby’s health. But you can manage it with planning, determination and support!