Verbatim extracts from women's responses about support needs

Maternal PKU is hard. It is a constant struggle to keep levels down and a constant worry that your baby will be healthy. Many health care professionals whom you encounter during pregnancy are not well enough educated on issues surrounding maternal PKU.

Most hospitals do not have much knowledge of PKU, so my local gynae team would question things that would worry me on occasion (i.e. risk of PKU being passed on to my baby), when logically I already knew of this through my Dietetic Team.

There should be more advice out there for women with PKU. No one understands, not the consultant led units in the maternity units, not the GPs and no working places are made aware.