Maternal PKU

A woman with PKU is likely to have a child who does NOT have PKU, although the child will always at least be a carrier. To ensure your baby is healthy, your Phe levels should be less than 240 μmol/L (4 mg/dL) prior to conception and throughout your pregnancy for optimal fetal development.

Women with PKU can become pregnant and have normal, healthy babies. Strict metabolic control prior to conception and during pregnancy significantly improves the outcome of babies born to women with PKU.

Despite this knowledge about strict metabolic control, babies with variations of maternal PKU syndrome continue to be born at an alarming rate.

To receive support during your pregnancy, you can make use of the resources from the NPKUA’s Maternal PKU Mentor Program.

Did you find out you’re pregnant and have not maintained control of your Phe levels? Don’t panic—go to your clinic to get help to gain control of your Phe levels now!

Tips for women with PKU during pregnancy

  • Gain control of your Phe levels before conception
  • Find out if you are Kuvan-responsive before conception. If you are Kuvan-responsive, talk to your doctor about continuing on Kuvan during pregnancy
  • Maintain Phe levels <240 μmol/L (<4 mg/dL) before and throughout pregnancy
  • Do not take LNAAs during pregnancy
  • You will have the same routine medical appointments as other women
  • Maintain your low Phe diet throughout and after your pregnancy for the best outcomes for you and your new baby

Congratulations on your baby! Don’t worry: women with PKU can safely breastfeed their babies!

The Maternal PKU Mentor Program

A peer mentoring program for women with PKU who are pregnant or planning to become pregnant.

The Maternal PKU Mentor Program is a pilot project of the National PKU Alliance Adult Program. This unique program establishes a mentor-mentee relationship between two women with PKU; one being pregnant or planning to become pregnant and the other having already experienced a successful pregnancy. MORE>