Neonatal hemochromatosis

What causes neonatal hemochromatosis?

The exact cause of neonatal hemochromatosis is unknown. It is thought that women who have a baby with neonatal hemochromatosis may have an immune system that recognized the cells of the baby’s liver as foreign. The immune system is responsible for protecting people from infection. When a woman is pregnant, her immune system is supposed to protect both the mother and the baby from infection using antibodies (molecules that recognize infections). It is thought that in some cases, a woman’s immune system may direct antibodies against the baby’s liver cells. This causes the liver to be unable to absorb iron correctly. When the liver is damaged, too much iron collects in other tissues of the body. This leads to the signs and symptoms of neonatal hemochromatosis.

Last updated on 05-01-20

Is neonatal hemochromatosis inherited?

Neonatal hemochromatosis is not thought to be inherited. This means that changes in a specific gene are not thought to cause neonatal hemochromatosis. Instead, it is thought that the disease is caused by a woman’s immune system mistakenly directing antibodies against the cells of the baby’s liver. A woman who has had one baby with neonatal hemochromatosis may have an immune system with antibodies that are more likely to recognize the liver cells of a developing baby as foreign. Therefore, each future baby of a woman who has had one baby with neonatal hemochromatosis is at an 80% chance to have the disease as well.

Last updated on 05-01-20

How might neonatal hemochromatosis be treated?

Treatment options for neonatal hemochromatosis may include blood exchange transfusion and intravenous immunoglobulin (IVIG) therapy. These processes are aimed at removing excess iron from the blood. However, these treatments are only supportive and cannot cure the disease. In most cases, a liver transplant is necessary because babies with this disease have severe liver damage. Unfortunately, the symptoms and organ damage caused by neonatal hemochromatosis can be so severe that babies with the disease may not survive even with treatment. Women who have had a baby with neonatal hemochromatosis may be recommended to receive IVIG treatment in future pregnancies to prevent having other pregnancies affected with the disease.

Last updated on 05-01-20

Name: Iron Disorders Institute Inc. P.O. Box 4891
Greenville, SC, 29608, United States
Fax : 864-292-1878 Email: Url:
Name: Children's Liver Disease Foundation 36 Great Charles Street Birmingham, B3 3JY
United Kingdom
Phone: +44 (0) 121 212 3839 Fax : +44 (0) 121 212 4300 Email: Url:
Name: American Hemochromatosis Society, Inc. PO Box 950871
Lake Mary, FL, 32795, United States
Phone: 407–829–4488 Toll Free: 1–888–655–IRON (4766) Fax : 407–333–1284 Email: Url:
Name: Canadian Hemochromatosis Society 7000 Minoru Boulevard Suite 285
Richmond British Columbia, V6Y 3Z5 , Canada
Phone: (604) 279-7135 Toll Free: (877) 223-4766 Email: Url:
Name: Haemochromatosis Society PO Box 6356
Rugby Warwickshire , CV21 9PA, United Kingdom
Phone: 03030 401 101 Email:, Url:
Name: Neonatal Hemochromatosis Information Center P.O. Box 950871
Lake Mary, FL, 32795-0871, United States
Phone: 407-829-4488 Toll Free: 1-888-655-IRON Email:

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The RareGuru disease database is regularly updated using data generously provided by GARD, the United States Genetic and Rare Disease Information Center.

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