Congenital hepatic fibrosis with an enlarged liver & spleen diagnosed at 5yrs old

Im writing thi post to help anyone out there who i can. I did not and do have a child with a liver disease. I am the child well not anymore lol. Im 36 yrs old and i havent had to get a transplant yet. Yes i did everything normal kids do. I was on a softball team i was a cheerleader. I even went skydiving. The doctors told my parents that without a new liver i probably wouldnt make it past 10. Well here i am living a wonderful life. Im just a little itchier than most. People tell me i have beautiful cat eyes lol. I take it all in stride­čś║ so parents out there drs know most things but not EVERYTHING. Never loose hope even when it seems like the cards are not on your side and your kids are so sick of hospitals and drs testing them. There are miracles

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  • God bless you

  • Thank you so much for posting this hope!!! As our hearts break apart every hope counts!

    But I would like to ask you if you are on meds and for how long?

  • Hi,

    My son is now 15 and was diagnosed 3 years old.

    His spleen is now getting rather large. How large (in cm) is yours?

    Did you have varies? And did any of them ever burst?

    Lots of questions and hopefully you can answer some of them.

    He is just like you enjoying himself and a keen roadcyclist, much faster than me!

    Many thanks

    Monique and Matt

  • Thank You for posting this, this has given me inspiration and hope, xx

  • Thank you for the encouraging post! My child was diagnosed at 18 months with CHF of the liver. Does anyone out there with this disease have reacurring nose bleeds? Sometime it can take 30 minutes before they stop! Anyone deal with pure black bowel movements/diarrhea? It's such a rare disease and it can make you feel isolated as a parent when people don't understand why your child looks so frail, has a big belly and gets sick easier than the average kid.

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