If you go surfing the net to look for information on other family’s experiences with NH then it’s a frustratingly fruitless search. The most useful site we found is dedicated to Katelyn Michelle Madsen.
If you’ve read our account of Ellen, you’ll be struck, as we were, by the similarities. The early contractions – trip to the hospital – no amniotic fluid – emergency cesaerian. There were also many differences, which highlight the many unknowns that surround NH.
I’ve often wondered whether if we’d been living in a major city and not in Mount Isa would Ellen have survived. Perhaps her life would have been extended for a few weeks but based on all the information I’ve read the outcome would most likely have been the same.
There are a couple of other sites that families have set up:
Aiden’s Story. Aiden survived NH thanks to a liver transplant. One of the few recognised treatments available. His story shows the huge emotional rollercoaster ride that you board in this situation.
Pray for Andrew. Andrew also survived NH (I think the stories of survival are easier to tell. I wonder if I would be writing this for if I didn’t believe that the next chapter in our own story will include a miracle). Faith in God was obviously an immense source of strenth for Andrew’s family. I know it meant a great deal to Mary that we had people praying for Ellen, Mary and our family.
Finally there’s a memorial page on the neonatalhemochromatosis.org web site that contains others’ stories.