Unfortunately, Neonatal Haemochromatosis is usually deadly to the fetus (unborn baby) or if born alive, kills the baby in the first weeks or months of the baby's life due to complications of the toxic amounts of iron in the baby's body. A liver transplant can, in some cases, save the baby's life and/or a combination of special drugs. A woman may have one or more healthy children in her life before having an NH baby. A woman can have a healthy child after an NH baby, however, the risk of a woman having another NH baby after having her first NH baby is greater than 80%. The good news is that new research has provided a treatment for such women who become pregnant again permitting them to have a healthy baby in the future. More information on this miraculous treatment appears on the Neonatal Haemochromatosis Information Centre website (see link below).

In the meantime, researchers are also searching for a way to screen pregnant women and detect first time unsuspecting NH mothers before they give birth to a severely ill NH baby, so that the pregnant woman may be treated in some way early in her pregnancy to prevent the first child from being affected with NH or experiencing life threatening complications and death (either before or after birth).

 

 

Neonatal Haemochromatosis is so rare that a study of the disease by King's College Hospital recorded just 19 cases from 14 families, occurring over a 12 year period.  It is suspected that NH may be the biggest cause of stillbirth, but because of the rarity of the disease it is virtually unknown and so usually goes undetected.