Neonatal Hemochromatosis Information Center (NHIC)
Are you facing NH?
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at: 407-829-4488 or toll free: 1-888-655-IRON (4766)
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Mailing address: NHIC,
P.O. Box 950871, Lake Mary, Florida 32795-0871
The American Hemochromatosis Society dedicates this web site in
of the children
who have lost their lives to Neonatal Hemochromatosis (NH)
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.
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).
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).
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
Thomas, President/Founder, American Hemochromatosis Society and Founder/Director, Neonatal Hemochromatosis Information Center Website
Welcome to the Neonatal Hemochromatosis
was created to help those families affected by Neonatal Hemochromatosis
Hope, An effective 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
1-312-227-4599 and ask for Dr. Whitington or Denise Jones.
F. Whitington, MD
Sally Burnett Searle Professor of Pediatrics and Transplantation
Director, Organ Transplantation, Siragusa Transplantation Center, Ann
& Robert H. Lurie Children’s Hospital of Chicago
Professor of Pediatrics and Medicine, Northwestern University Feinberg
School of Medicine
T 312.227.4599 | F 312.227.9645 | firstname.lastname@example.org | email@example.com
225 East Chicago Avenue, Box 57, Chicago, Illinois 60611-2605
- 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....
How to get it...
about the effective 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
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:
F. Whitington, MD
Sally Burnett Searle Professor of Pediatrics and Transplantation
Director, Organ Transplantation, Siragusa Transplantation Center,
Ann & Robert H. Lurie Children’s Hospital of Chicago
Professor of Pediatrics and Medicine, Northwestern University
Feinberg School of Medicine
T 312.227.4599 | F 312.227.9645 | firstname.lastname@example.org
225 East Chicago Avenue, Box 57, Chicago, Illinois 60611-2605
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: email@example.com
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
"I can truly say
that he is a 'miracle walking'..."
Hemochromatosis: Carrell's Story
son, Carrell, was born on Jan 26, 2006…full term 8 lbs 4 oz...all of his doctor's
visits were normal, however, he was due Jan 27 and they induced me because I
was borderline toxemia.
I had a C-section and unlike most moms who get to hold and spend time with their
baby once I was out of recovery, they brought him to me in an incubator to touch
through a tiny hole. I didn't understand and wanted answers. I later found out
that he was ill and his blood sugar levels were 12 when they should have been
above 70. It was then I knew it was more serious. Initially they thought it
was newborn Jaundice but as the days went on his bilirubin and ferritin levels
were beyond normal and out of control. They gave him fresh plasma but then he'd
be good for only a day.
finally 10 days later on February 7 th , we were moved to a trauma and children's
hospital where they did a liver biopsy to try and diagnose him. After researching,
a disease called Biliary Atresia came up never NH but they quickly ruled that
out and NH was diagnosed. After 3 long weeks on February 13th we were put
on an emergency flight to Texas Children's Hospital in Houston.
we arrived, I spoke with the doctors and a case worker who gave me a pager as
my son's name was already on the liver transplant list. They explained a breakdown
of what transplant patients go through and what to expect. His father and I
couldn't believe what was happening but just wanted a healing for our little
Carrell. He was so ill and yellow and smelled metallic.
discussed on the second day there about performing a procedure on my child with
NH that had never been done before and it was a 50/50 chance so his dad and
I went for it. They began the exchange transfusion and we prayed and prayed
and prayed some more. By the next day, my child's bilirubin levels had dropped,
his metal smell was vanishing, his eyes were no longer yellow but white and
he was doing great.
went home 3 weeks later on March 10 with specific medication instructions. I
can truly say he is a “miracle walking”. We often run into his doctor
and he instinctively checks his liver and hugs him tight because he tells us
he remembers how sick he was. The initial run in with this doctor made him cry
as we called out his name as he was passing though the cafeteria. As we introduced
ourselves and explained who Carrell, then 3, was he burst into tears overfilled
with joy, and so did we because he was the doctor that called the shots that
day and saved our baby's life. I'm just grateful to God for sparing my baby's
life. He's truly supposed to be here.
Carrell plays football, soccer, and basketball and he loves swimming and wrestling.
Thank you so much for allowing me to share our story.
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