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Women’s Health

Maternal PKU

PKU-specific resources for pre-conception, pregnancy, and postpartum/breastfeeding with links to read more or download.*

CanPKU+ strongly supports women to attend a metabolic clinic as soon as possible during their pregnancy journey for optimum health of mom and baby.

Pre-conception (PKU)

Aim for and maintain blood phenylalanine (Phe) ≤ 360 µmol/L (≈2– mg/dL) before conception and keep levels stable through early pregnancy [1][2]. Use these patient- friendly guides to plan questions and routines [3][8].

During Pregnancy (PKU)

Keep maternal Phe ≤360 µmol/L in all trimesters; adjust formula/meals with your clinic. [1][2]

Postpartum & Breastfeeding (PKU)

Continue maternal PKU management postpartum.

Maintaining healthy PHE levels will help you establish the best possible mental health. Postpartum depression is a real possibility for all new moms. High PHE levels added to the situation will make these risks higher and may present more severe.

Breastfeeding is acceptable when the infant does not have PKU; coordinate with your metabolic team for individualized guidance [2]..

 

Research & Evidence

Current guidance supports lifelong PKU treatment and maintaining Phe ≤360 µmol/L for neurocognitive outcomes and to prevent fetal effects of maternal hyperphenylalaninemia [1][2].

Current Trials:

PALomino - Fetal and Infant Outcomes of Exposure to Palynziq® (Pegvaliase) During Pregnancy and Breastfeeding 

Information  on the internet can become dated without us being aware. Should you notice this trial no longer being  active - please notify us to update this page at website@canpku.org

Community

Connect with a clinic
If you are not yet connected with a Metabolic Clinic and you are considering pregnancy or are already pregnant and have PKU - please request a referral to the closest clinic. Help locating the nearest clinic can be found here.

Connect with peer supports. Please reach out to admin@canpku.org for a referral to the correct team/woman who has successfully managed a PKU Pregnancy delivering healthy babies.
 
Shared for community perspective is not medical advice.
 
 

Blog

Shared personal blogs are not medical advice.

Informational Resources used above and provided for further reading:

  1. ACMG — PAH (PKU) Evidence-Based Guideline (2024). https://www.acmg.net/PDFLibrary/Phenylalanine-hydroxylase-deficiency-EBG.pdf
  2. ACOG — Management of Women with PAH Deficiency (PKU) (2020). https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2020/04/management-of-women-with-phenylalanine-hydroxylase-deficiency-phenylketonuria 
  3. NPKUA — Pregnancy Overview. https://www.npkua.org/resources/pregnancy/ 
  4. NPKUA — My PKU Binder, Chapter 9: PKU & Pregnancy (PDF). https://www.npkua.org/wp-content/uploads/2024/07/PKU-Binder-2011-Ch9.pdf 
  5. Nutricia — PKU & Pregnancy: A Very Special Time in Life (PDF). https://www.nutricialearningcenter.com/globalassets/pdfs/metabolics/pkuandpregnancy.pdf
  6. Nutricia — Guide to PKU: Pregnancy (Education Series) (PDF). https://www.nutricialearningcenter.com/globalassets/pdfs/metabolics/pku-education-series_pregnancy_apr2020.pdf
  7. Nutricia — Maternal PKU Fact Sheet (PDF). https://www.nutricialearningcenter.com/globalassets/pdfs/metabolics/maternalpku-factsheet.pdf 
  8. MotherToBaby — Maternal PKU & Pregnancy (PDF). https://mothertobaby.org/fact-sheets/maternal-pku-pregnancy/pdf/ Open
  9. NPKUA — Kits & Guides. https://www.npkua.org/resources/kits-guides/ 
  10. A Global, Multicenter Study to Assess Maternal, Fetal and Infant Outcomes of Exposure to Palynziq® (Pegvaliase) During Pregnancy and Breastfeeding (PALomino) Calgary,  AB  https://clinicaltrials.gov/study/NCT05579548
* Some linked resources originate outside Canada. Local policies, coverage, and healthcare pathways may differ.