Any advice for new parents to the board?

Avatar for Cmmelissa
iVillage Member
Registered: 11-13-2008
Any advice for new parents to the board?
Fri, 03-16-2012 - 3:48pm

My dh has a friend who's infant was just diagnosed with CF.

Avatar for adamsmomplus2
Community Leader
Registered: 09-09-2000
Fri, 03-16-2012 - 5:19pm

While I haven't been through the infant stage of CF, I think the most important thing for parents of kids newly diagnosed is that CF Is NOT a "death sentence." CF is manageable, and life expectancy is always increasing and the horizon of new CF treatments is very bright. Being diagnosed as an infant is a huge advantage. My dd was diagnosed at birth, and, in spite of the environment in which she started, she has thrived and has very little CF lung damage because treatments, including enzymes, started right away. Compare that to my friend whose dd wasn't diagnosed until age 3-and-a-half. Her dd has much more lung damage and has a harder time with CF complications because she had all that time to develop the lung damage.

The thing I say most about CF is that, yes, it is hard at times, but once treatments become routine, it's just like every other routine we get into with our kids, it just becomes a part of our lives and we just DO it.