Welcome to the Neonatal Hemochromatosis
was created to help those families affected by Neonatal Hemochromatosis
Important information--New Hope, New Treatment*:
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.
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.
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 email@example.com
call: 1-312-227-4599 and ask for Dr. Whitington or Denise Jones.
- See the Medical Literature page on this website for links to medical literature/articles as well as links to informational and patient advocacy websites.
and Mary live in Australia and they have a compelling story to
tell at their web site...it will be an inspiration to any family
that has experienced the heartbreak of Neonatal Hemochromatosis....This
family has experienced the tragedy of losing their first child
to NH, but they have also experienced the joy and miracle of having
another baby who is healthy after that loss. Learn how they
survived this experience and how they were able to have a healthy
child using a new and exciting treatment during pregnancy....
*New Hope--New Treatment: How to get it...
about the new treatment for pregnant women who have had NH babies
in the past. The chance of having another baby with NH after a
woman has had the first NH baby in her family is greater than
Now, there is a treatment developed by Dr. Whitington, which can potentially help these women avoid NH in the future.
(pictured above) is the exciting result of this new treatment.
Go to the "Photos" section for more photos of babies
whose mothers had this treatment.
Learn how to enroll
in Dr. Peter Whitington's research studies in the future and/or how you can be treated by him, or have your local doctor, wherever you live in the USA or world, treat you with his protocol. Here is his contact information:
Peter F. Whitington, MD
The Sally Burnett Searle Professor of Pediatrics and Transplantation
Northwestern University Feinberg Medicine School
Chief, Division of Gastroenterology, Hepatology and Nutrition
Director of the Siragusa Transplantation Center
Ann & Robert H. Lurie Children's Hospital of Chicago
225 E. Chicago Avenue, Box #57
Chicago, IL 60611
Phone: (312) 227-4599
Phone(Please note that this is a new number): 312-227-4599
September 9, 2007:
researcher, Dr. Peter Whitington, spoke on "Neonatal/Pediatric
Hemochromatosis" at the Clinical Research Single Topic
Conference in Atlanta, Georgia sponsored by the American
Association for the Study of Liver Diseases (AASLD).
improves neonatal hemochromatosis
Infants born with neonatal hemochromatosis, an iron storage
disorder, often die from it. Liver transplantation, however,
may cure the disorder. Researchers at the University Medical
Center Hamburg-Eppendorf, Germany, studied 16 infants with
suspected neonatal hemochromatosis who were treated with
antioxidants and liver transplantation between 1992 and
2004. They found that this type of treatment helped 11 of
the infants (75%) survive after 5 years. This shows that
early treatment improves the chances of survival for an
infant with neonatal hemochromatosis. The research was published
in the November 2006 issue of Pediatrics.
America! TV show featured Neonatal Hemochromatosis researcher,
Peter Whitington, MD and an NH family.
By LISA MILLER
St. Augustine Record, St. Augustine, FL
Communities & Forums
Anyone who is a member of an affected family may contact us at: firstname.lastname@example.org
or call us directly at the American Hemochromatosis Society office at:
407-829-4488. No personal information
is ever given out without the express permission of the families
involved and privacy is of the highest priority. Families
are welcome to share their experiences and stories through this
web site, or privately, to help educate and support others. We recommend that anyone wishing to connect with other families should contact Dr. Peter Whitington who has a database of families who are eager to communicate with other NH families around the world. You are not alone.
The Neonatal Hemochromatosis Information Center (NHIC) is not a substitute for professional medical care. The information provided here is for educational purposes and as a center for emotional support. NH is a serious disease and we urge you to contact experts in this field for recommendations for your child and to consult with your child's doctor. We urge family members to reach out to Dr. Peter Whitington (whose contact information is on this website) for direction. Many families who contact us request that Dr. Whitington call their baby's doctor(s), however, your baby's doctor needs to contact Dr. Whitington. In the field of medicine, the protocol is for the physician of the baby to contact the expert for recommendations. So, copy down Dr. Whitington's contact information and give it to your own doctor(s) and ask him/her to please contact him so that they can discuss the best treatment plan and medications for your baby so that your child has the best care possible. You are welcome to call Dr. Whitington yourself, too, but he will also need to speak with the baby's doctor in order to be able to help.
Jonathan/NH Survivor: A Story of Hope
"Jonathan...our beautiful boy"
Our son Jonathan was born 2/12/2008. When he was born with liver failure and at the first hospital for two weeks, they could not figure out what caused his liver failure. Finally, we were transferred to Children's Hospital in Denver, Colorado and the liver Dr. on call was Dr. Cara Mack who had worked under Dr. Whitington at Northwestern in Chicago. She knew about neonatal hemochromatosis (NH) and the proper tests were run just in time. He was started on the antioxidant IV drip and two months later we brought him home. At the age of two, his liver numbers were still elevated but nobody would ever know he was such a sick baby at birth. We are so lucky to have been transferred to Children's Hospital in Denver at just the right time. I attached a picture of our beautiful boy.
Thanks for all you do.
Update/March 16, 2012:
Jonathan is now four years old and we just had his bloodwork checked and his liver is normal!!! We have an appointment on Monday at Children's hospital for a check up with Dr. Mack. He is such a miracle and is living life as a normal four year old. I am attaching a couple current pictures of our sweet boy! The first one is him with his older brother Jacob. Thank you. Sincerely, Jennifer Durso
Jonathan (left) with his older brother, Jacob
"He is such a miracle and is living life as a normal four year old..."
says Jonathan's mom