Living with Galactosemia


Galactosemia in Newborn/Infancy


Babies are first diagnosed with galactosemia during the newborn screening process, which is done in all 50 states. After the initial result it will be sent for further testing and confirmation. During that time mothers will need to stop breastfeeding and start feeding the baby Soy (or other diary free) formula.

The newborn screening results can take anywhere from a few days to a week or more. Some children are diagnosed before any symptoms begin, some will have several different complications – that usually improve once a dairy-free diet is started, and still others may show some symptoms even without being fed breastmilk.

The following complications can occur immediately after birth. Once your baby stops consuming breast milk or dairy formula these symptoms will likely resolve.

Ongoing Complications

After the acute complications are resolved your baby may experience ongoing complications because the body continually makes endogenous galactose.

  • Feeding difficulties
  • Cataracts
  • Growth issues

First Appointments

There is a chance your baby’s primary physician may not be familiar with galactosemia, and that’s okay. You’ll be referred to a local metabolic specialist who will see your baby regularly and do the necessary assessments and testing as your child grows. The first appointment will likely feel overwhelming, and include several different individuals including: a metabolic specialist, a geneticist, a nutritionist and sometimes a social worker. Your baby will likely see the specialist every 6 months for the first few years of life.

Galactosemia Toolkit for Newly Diagnosed Families

The Galactosemia Foundation’s informative guide gives you the tools and resources you need to be the best advocate for your child.