Living with PKU … during pregnancy, whilst planning a pregnancy and as a new mum
Women with PKU need extra support to have healthy pregnancies.
High phenylalanine levels during pregnancy can restrict the normal development of the unborn baby. This can cause permanent harm, such as brain damage (leading to learning difficulties), microcephaly (a small head), heart defects and a low birth weight. This damage is known as maternal PKU syndrome.
Women with PKU need to be reassured that they can have healthy pregnancies with the right planning and support.
This section contains resources about managing PKU in your pregnancy.
The BUMPER PACK
As part of our research and advocacy work, NSPKU has called for improvements in the care available for women with PKU to support their pregnancy and maternal experiences. You can read more about our research in this area here: