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Pregnancy

Pregnancy with PKU

While there can be risks to becoming pregnant with PKU, women with PKU can have healthy pregnancies and babies. Strict metabolic control prior to conception and during pregnancy significantly improves the outcome of babies born to women with PKU and reduces the chance of the baby developing maternal PKU syndrome. The NPKUA has information and programs to support you whether you are thinking about becoming pregnant, planning a pregnancy, or are currently pregnant.

We offer our Mentor program with mentors who have experienced pregnancy and PKU and our Maternal PKU Emergency Assistance Program to provide emergency access to low-protein foods, and informational resources about pregnancy and PKU.

Maternal PKU Syndrome

Women with PKU can avoid Maternal PKU Syndrome and have healthy pregnancies with proper planning and management. Maternal PKU Syndrome is believed to be caused by high, uncontrolled Phe levels in the mother, which may lead to the following in the baby:

  • Heart problems
  • Small head size
  • Physical deformities
  • Slow development
  • Brain damage

My PKU Binder includes additional information about pregnancy and PKU as well as Maternal PKU Syndrome.

Maternal PKU Emergency Assistance Program

The goal of this program is to assist women with PKU who are currently pregnant and have no access to low-protein foods due to financial barriers and lack of insurance coverage. To be eligible for this program you must be under the care of a qualified health care professional practicing at a metabolic clinic in the U.S.A and currently reside in the U.S. The application must be filled out and submitted by a medical professional from the patient’s clinic.

The emergency assistance package consists of staple foods that are generally easy to incorporate into a/the diet and require minimum preparation. The package will consist of: 15 boxes of low protein pasta, 1 container of Mix Quick, and 3 loaves of home-style bread.

NPKUA Mentor Program

We offer our Mentor program with mentors who have experienced pregnancy and PKU. Click here to learn more and connect with a mentor.