Welcome to the Neonatal Hemochromatosis Information Center (NHIC)

Mission Statement

The Neonatal Hemochromatosis Information Center's mission is to serve as a resource for information about the latest research and treatments for Neonatal Hemochromatosis (NH), a rare and deadly disease of the fetus and newborn.  It is the purpose of the NHIC to bring families affected by NH together for emotional support and to serve as a bridge between patients, their families and the doctors and researchers working to find a cure for Neonatal Hemochromatosis.  It is also the mission of the NHIC to educate the mothers of NH babies that it is possible to have a successful pregnancy and healthy baby in the future by using newly developed therapies during pregnancy.  These new treatments can offer new hope to families who have suffered the tragedy of losing one or more children to NH.  Finally, it is the mission of the NHIC to put families and their doctors in communication with leading experts in the NH field.  Through these efforts, it is our hope that families will be better able to cope with the challenges of NH and to help in the quest to find a cure for NH.

The NHIC and this web site was created by Sandra Thomas and David Snyder and is sponsored by the American Hemochromatosis Society (AHS) www.americanhs.org  Thomas and Snyder serve as president and vice president, respectively, of AHS.

Message from Sandra Thomas, President, American Hemochromatosis Society:

We are very pleased to present this web site for the Neonatal Hemochromatosis Information Center (NHIC).  For the past 20 years, I have become familiar with the tragic stories of neonatal hemochromatosis families.  I have been contacted through the years by concerned parents, grandparents, and friends of NH babies, desperate for help and information.  Unfortunately, in the past, little could be done to help NH babies, other than a liver transplant and some drugs which helped the babies survive longer while waiting for a transplant. 

Now, there is hope on the horizon as new drugs are being used to treat women who have previously had NH babies, thusly putting them at high risk (80% or greater chance) of having another NH baby in the future.  These women can now have hope of having a child who will survive, even if he/she is born with NH, because the drugs, given during the pregnancy, helps the child to cope with the NH like never before in medical history.  This is truly a miraculous discovery and hopefully, will lead the way to other breakthroughs such as ways to identify women at risk of having NH babies for the first time so that they can be treated during their pregnancies and never have to lose a child to NH. 

Because NH is so rare, it is extremely difficult for families to know about one another.  We hope to bring these families together for emotional support and an opportunity to share information and experiences.  NH can be misdiagnosed so the more information that families and doctors can access the better.  We are here to help in any way we can.  Anyone wishing our help, whether in a crisis situation or not, should contact us at our office at: 407-829-4488 and/or email us at: mail@americanhs.org   We want everyone to know that they are not alone and that we will do everything we can to help you and your baby. 

Sincerely,

Sandra Thomas, President/Founder, American Hemochromatosis Society (AHS)