Neonatal Hemochromatosis is an extremely rare yet deadly pediatric liver condition that develops during pregnancy, but specialists are predicting this disease is on the rise. SheKnows uncovers the truth about NH through one woman’s journey.
If you haven’t heard of Neonatal Hemochromatosis (NH), you are not alone — only about 151 documented cases exist worldwide. SheKnows Parenting sat down with Jodi Hagen — aka case No. 151 — to hear her personal experience.
What it is
According to the Neonatal Hemochromatosis Information Center (NHIC), NH is defined as “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.”
Basically, NH is an allo-immune disease that develops during pregnancy, delivering a fatal iron overdose to the fetus. Specialists believe NH may be to blame for some third trimester miscarriages, stillborn births and SIDS cases, so NH may become more common in the future. NH is not genetic, and there is no screening test or cure for the disease.
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One woman’s journey
Reward outweighs risk
According to NHIC, “The risk of recurrence in subsequent offspring of a woman after the index case is greater than 80 percent.” So why would Jodi, or any other mom want to chance having another child… only to lose him or her after a few fleeting days or weeks? Because there is hope.
When Jodi and her husband Tim welcomed their son Tyler Jaycob (TJ) on August 30, 2010, life couldn’t be better… until hours later when the new mom was snuggling with her little man only to notice he was slightly blue. Nurses rushed TJ away, but Jodi was assured everything would be fine. It wasn’t. Over the next few days, TJ was tested for all sorts of neurological disorders, but all tests came back fine. His platelet count continually dropped to dangerously low levels, and doctors appeared baffled.
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TJ was flown to the University of Arizona Medical Center in Tucson, Arizona, to undergo a biopsy, however his blood did not clot so the procedure could not be performed. After 26 days, the Hagens said farewell to their angel and joined a tight-knit group of families who have lost their babies to this horrifying disease.
Peter Frank Whitington, M.D., of Children’s Memorial Medical Center, has done extensive research on NH and has developed the intravenous immunoglobulin (IVIG) — a weekly infusion treatment that women with NH history can begin at 16 weeks of pregnancy. If a baby is born with NH, he can receive the IVIG treatment as well, but the disease has to be diagnosed within the baby’s first 24 hours of life or it may be too late.
Jodi’s story is one of inspiration, strength and hope. She continues to share it as a way of healing. She and other NH families have come together to support one another, as well as to raise awareness about NH and hopefully aid in finding a cure.