Classical Galactosaemia (C Gal)

Classical galactosaemia (C Gal) is a rare genetic (inherited) condition where babies can get very sick from drinking milk - either breast milk or formula milk.

How C Gal affects babies

C Gal is when your baby's body is not able to break down galactose. Galactose is 1 of the 2 sugars that make up lactose in human breast milk and cows' milk. It is also in some formula milks.

If your baby has C Gal, high levels of galactose build up in their body. This can become toxic and may be life-threatening.

C Gal is not an allergy to lactose or milk.

Screening for C Gal

There are 2 ways of checking if a baby has C Gal:

• heel prick screening
• the Beutler test

Heel prick screening

All babies are tested for C Gal as part of heel prick screening. This happens 3 to 5 days after they are born.

Heel prick screening

The Beutler test

C Gal is more common in babies born to Irish Traveller parents. If you are a member of the Traveller community, your baby will be offered a screening test called the Beutler test. They will usually have this on the day they are born.

If you are not from the Traveller community, but your baby has a sibling with C Gal, they will also have the Beutler test.

The Beutler test is also done as a heel-prick test.

Results are normally back in 2 to 3 days, but it could be quicker.

Beutler test for babies in the Traveller community

Feeding your baby during screening

Your midwife will recommend that you do not feed your baby breast milk or some formula milks until the test results come back. This is to keep them safe until you are sure they do not have the condition.

Instead, your midwife will offer you a milk that does not contain lactose or galactose, such as Nutramigen or Neocate formula, while you wait for the results.

Talk to your midwife if you plan to breastfeed. They can give you advise about hand-expressing breast milk while you are waiting for the results of the Beutler test.

If your baby does not have C Gal

When you know that your baby does not have C Gal you can stop using lactose and galactose-free formula.

If you plan to breastfeed, speak to your midwife for support. If you want to bottle feed, you can switch to the formula you choose.

If your baby has C Gal

If your baby has C Gal you must use lactose and galactose-free milk to manage the condition. They will need a galactose-free diet for life.

Babies with C Gal will be referred to the National Centre for Inherited Metabolic Disorders. There you can learn more about C Gal and looking after your baby.

If we do not screen for C Gal

If C Gal is not found and managed it can cause:

• liver damage
• brain haemorrhage (a bleed on the brain)
• sepsis (blood poisoning)
• cataracts (cloudiness in the lens in the eye that affects vision)

C Gal can cause long-term damage later in life.

This can include:

• development delay - particularly in speech
• brittle bones
• dyspraxia (a condition that affects movement and co-ordination)
• ataxia (a condition that affects speech, balance and co-ordination)
• problems with puberty
• problems with fertility in women

Long-term health complications can still happen even when C Gal is well managed.