Neonatal Hemochromatosis Information Center (NHIC)

Are you facing NH? 

Call us directly at: 407-829-4488 or toll free: 1-888-665-IRON (4766)

Email: mail@americanhs.org           Visit us on Facebook           

 The American Hemochromatosis Society dedicates this web site in loving memory

of the children who have lost their lives to Neonatal Hemochromatosis (NH)  

    www.neonatalhemochromatosis.org        

Medical Definition:

Neonatal Hemochromatosis (NH) is a rare gestational condition in which iron accumulates in the liver and
extrahepatic sites of the fetus in a distribution similar to that seen in hereditary hemochromatosis.
It is usually lethal to the fetus or neonate.   The risk of recurrence in subsequent offspring of a woman after
the index case is greater than 80 percent.  

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What exactly does this medical definition mean? 

First described in 1957, Neonatal Hemochromatosis (NH) is a rare condition which occurs while the baby is developing in the mother's womb.  Toxic levels of iron accumulate in the liver as well as other places in the unborn baby's body.  NH looks very much like another condition known as "Hereditary Hemochromatosis" (HH) also known as iron overload disease which is genetic (see www.americanhs.org for more information on Hereditary Hemochromatosis)   NH is not considered to be "genetic".  (Please note: If you have hereditary hemochromatosis (HH) you will not have an NH baby.  If your baby is born with the gene mutations for hereditary hemochromatosis, your baby will not have NH but may be at risk for HH later in life.  By knowing the genetic status of the baby for HH, though, you can prevent high iron storage from ever happening in the first place.  HH and NH are two different diseases, and although the symptoms are similar and the damaging factor is high iron, it is not the same condition and therefore, those with HH do not need to be concerned about having an NH baby anymore than anyone else in the general population. Also, NH should not be confused with Juvenile Hemochromatosis, which is another condition of excess iron).

Unfortunately, Neonatal Hemochromatosis 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.  Occasionally, a baby will "overcome" the effects of NH and survive without a liver transplant.  It is imperative that the baby is treated by physicians familiar with the disease or physicians willing to consult with experts familiar with this disease.  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 this web site. 

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). 

Parents of NH babies have kindly donated information and autopsy results/samples to researchers to help them to prevent this tragic condition from affecting other families in the future.  We salute the families of NH babies and the NH researchers as they search for a screening test and cure for Neonatal Hemochromatosis.

Sandra Thomas, President/Founder, American Hemochromatosis Society and Founder/Director, Neonatal Hemochromatosis Information Center Website

Welcome to the Neonatal Hemochromatosis Website

This website was created to help those families affected by Neonatal Hemochromatosis

Important information--New Hope, New Treatment*:

Dr. Peter Whitington hypothesized more than 10 years ago that NH is an immune-mediated gestational disease. He proposed to treat pregnant women whose previous baby was affected by NH with high-dose intravenous immunoglobulin (IVIG), a treatment known to be successful to prevent recurrence of other severe alloimmune gestational diseases. Because the disease was considered to be extremely rare, Dr. Whitington had to recruit subjects for this study from across the US and abroad. The treatment of 15 women in five countries was reported in Lancet in 2004. All of the women had pregnancies that proceeded to live births, all the babies survived and all developed normally, thus supporting the hypothesis that the disease is caused by an alloimmune mechanism. As a result of this publication, increased numbers of affected women have been referred. Indeed, Dr Whitington reported recently that he is receiving an average of a new referral per week. The 44th baby of women treated on his protocol was recently born and 8 women are under treatment. All babies born with gestational treatment are now healthy. He will top 50 in early spring at which time he'll write a follow-up paper.

Dr Whitington continues to do research to determine the precise pathophysiology of NH. Most recently he has reproduced NH in a mouse model and has demonstrated that affected women's sera contain antibodies that can directly kill fetal liver cells. Work ongoing has a goal of cloning the fetal liver protein targeted in NH in order to develop an immunoassay to detect the target antibody in women at risk of having affected babies. He would like to acknowledge the women who have had affected babies and their families whose hardships and sera make this work relevant and possible.

The American Hemochromatosis Society (AHS) (www.americanhs.org) and the Neonatal Hemochromatosis Information Center (www.neonatalhemochromatosis.org) have been supportive in making this happen. If you have interest in participating in his research, Dr Whitington can be contacted at p-whitington@northwestern.edu   or PWhitington@luriechildrens.org

call: 1-773-880-4643.