Galactosaemia – information about testing during pregnancy

You can now get tested to check your chances of passing on galactosaemia to your baby by a simple blood test while you’re pregnant.

How do I get the test?

  • Tell your doctor or the midwife/nurse at your hospital or doctor’s appointment that you are a Traveller and that you want to check if you carrythe gene for passing on galactosaemia to your baby.
  • Give them this leaflet and ask them to read the back page. They will refer you (and your baby’s father) to Crumlin Hospital (genetics department) to get the genetic test carried out.
  • The genetics department will get in touch with you to arrange an appointment and explain everything when you go in.

About galactosaemia

  • Galactosaemia is high in Travellers and if a baby has it, baby milk and breastmilk can be very harmful.
  • All Traveller babies should be tested for galactosaemia at birth (called the Beutler test, which is similar to a heel prick test but happens as soon as the baby is born).
  • Babies should be fed a soya-based formula until the result is in. This can take 1 to 3 days.
  • But if you and your baby’s father get tested when you’re pregnant and depending on the result (clear or negative for galactosaemia), your baby may not need to have a Beutler test. They may not have to be fed soya milk. They may be able to start on baby milk or breastmilk straight away.

 If you want to breastfeed

Breastfeeding is very good for babies. It strengthens them and brings them on well. Talk to the midwife/nurse at your hospital appointment if you think you might be interested in breastfeeding.

For more information email annemarie.o’