Early treatment improves neonatal hemochromatosis
Wednesday December 13, 2006
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.
Comments
Has anyone else had a baby with neonatal hemochromatosis? My son lived 5 weeks before losing his battle with this awful disease. It was many years ago before there was much research being done about it. I can’t help but wonder if he might have lived if he’d gotten the
treatments that are available today. You just never get over the nightmare of losing your child in such a gut-wrenching way.
yes i have i lost 2 little boys to this disease. i lost one in 2003 and another in 2005 they both lived approx 6weeks.
i now have a little girl who is 2. I had to have the infusions from being 16wks pregnant until birth it took 12hrs to infuse once a week. it was almost 100% that she would be born with Neonatel Hemochromatosis but she beat the odds and was born healthy she is my little miracle. I receved the treatment with my 2nd little boy but the treatment was started to late into my pregnancy at almost 20wks so the damage was already done.
i lost my son last year to neonatal hemochromatosis i had never heard of this and only know what i do by researching it all xx
is anyone else from england that has lost from this im still trying to understand all about it, which im finding quite hard xx
i have just read your comments kirsty and im so sorry for your loss. i have been reserching this since 2003 and feel i have a pretty good understanding if there is anything you would like to ask me i will try and help.
i have sadly lost 2 baby girls,charlotte died 2002 just 14 days old.We never knew why she had liver failure..soon after i fell pregnant and had my perfectly healthy girl sophie who is now 5..then may 31st this year(sorry last yr) i had ruby it came to light on day 2 she had liver failure.she died in our arms on day 4..we now know my girls died of NH as rubys pm confirmed it..i also have a son who is 9,they really are my miracles.
i decided to try again and have the ivig treatment,i had a miscarraige at 10week on 2 dec..so i never got far enough to start it
i am from leeds and my babies were at st James.