Galactosemia is an inherited disorder of the metabolism. This disorder occurs in about 1 in every 70 000 babies. Both Mom and Dad must have a galactosemia trait for the baby to develop the disease. The mother and father do not need to have any symptoms themselves.

What is Galactosemia?

It is essentially the lack of a specific enzyme in the liver that breaks down galactose into glucose. When anything containing galactose is consumed, the liver becomes weakened. Some infants may inherit a gene that allows for some galactose metabolism. 

Galactosemia Symptoms

(these symptoms usually occur three days after birth)

•    Vomiting.
•    Poor weight gain
•    Feeding issues. 
•    Jaundice. 
•    Enlargement of the liver and spleen. 
•    Bleeding.
•    Cataracts. 
•    Convulsions. 
•    Liver failure and mental retardation. 
•    More susceptible to E coli infections. 
•    May lead to fatal liver disease without treatment. 

If the baby is tested, and the tests come back positive, the mother should pump and store her breast milk until a second test can confirm the diagnosis, just as precaution.

If the second test confirms the condition, the mother will not be able to breastfeed her baby. The baby will then need to be fed lactose-free formula.

The mother can then decide if she would like to continue to pump and donate her breast milk or stop lactating all together. Donating breast milk will help the mother ease into the weaning process and will benefit other babies in need. 

Long Term Effects

If treatment is done quickly, a baby with galactosemia can live a normal life, although some complications may occur, including:

•    Cataracts.
•    Learning disabilities and speech disorders. 
•    Neurological impairment. 
•    Ovarian failure. (very common in women with this disorder) 

The Impact on Breastfeeding

If the baby has “classic galactosemia", in which the baby has no galactose metabolizing enzymes, the baby will need to be weaned abruptly, and then fed a lactose free formula.

Babies with “Duarte galactosemia" may be able to still breastfeed partially, depending on the enzyme levels.

Can a woman with galactosemia breastfeed her child, if her child DOES NOT have the disorder?

Yes, she can breastfeed, her milk is normal.

Tracy Behr, CBC, CLD (CBI)

founder of

Reference: Breastfeeding counselor course through ChildBirthInternational on the physiology of breastfeeding / Health problems.

Galactosemia Foundation

Parents of Galactosemic Children is a nonprofit organization providing a clearinghouse of information on this disorder, diet, and complications. It also provides a forum for support.

Creative - Raising a child with disabilities

Support for a Mom who needs to wean abruptly

•    Help for engorgement.
•    Mastitis symptoms and treatment.

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