Neonatal hemochromatosis

Neonatal hemochromatosis is a disorder caused by iron building up in the heart, pancreas, and liver in newborns. Liver disease is usually noticeable hours after birth. The iron build up most often leads to liver failure in newborns.

Hemochromatosis is typically a genetic disease in which the body absorbs too much iron from food, damaging many organs. Medical researchers and doctors are not certain of the cause, but neonatal hemochromatosis is most likely not genetic. Many researchers believe that the condition is caused by the mother’s immune system mistakenly attacking the fetus (maternal fetal alloimmunity) thinking that it is an outside invader. Mothers with one child with hemochromatosis are more likely to have another child with the disorder. If you already have a child with this condition, it may be helpful to speak with a genetic counselor who can help explain why this condition occurred and if there are any new testing and options available.

Doctors will likely make a diagnosis soon after your baby is born. Occasionally, the condition may be diagnosed prenatally (before birth). Treatment after birth requires supportive care with or without administration of an iron-chelating cocktail and several antioxidants. A liver transplant may also be a treatment option. Research is ongoing; therefore, talk with your baby’s doctor(s) about the most current treatment options. Support groups are also a good source of information and can connect you with other families who have had children born with neonatal hemochromatosis.