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Posted by on Mar. 23, 2007 at 9:41 PM
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Hi everyone my name is heather and I have a 4 year old daughter with cf .
by on Mar. 23, 2007 at 9:41 PM
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by Member on Mar. 24, 2007 at 8:07 PM

Hi Heather. My name is Christal. I have a 6yo son with CF. This group seems to be kind of quite, but I am hoping we can get it going. Unfortunatly I don't think there are alot of us CF moms around Cafemom. If you know any others point them this way.

by New Member on Mar. 26, 2007 at 11:02 AM
hi name is JJ and i'm not a CF mom-yet. I'm due in October and refuse to do the CF screening becuase it will change nothing. I know for a fact that i'm a CF carrier (my parents had myself and my siblings tested when we were young) and i have a 21 year old brother with CF. (he's doing great by the way!) My husband also has history of CF in his family. My doctor told me that he wanted me to get tested so that if it come back positive then i would still have time to abort. I'm looking for a new doc at the moment! Hope your little ones are feeling well today!
by on Apr. 25, 2007 at 1:14 PM
Wow honey, you sound so angry and defensive.  Please don't be. IT's such a miserable way to live, at a time when you should be so happy. 

I wouldn't give Jess up for the world.  But don't think I wasn't so afraid, my son would have it or Tai Sachs (I'm an ash kenazi jew sp?)  I was tested so that I'd know.  Fortunately I don't carry.  My husband loves his little girl with such a ferocity, I just don't know if he could handle another kid with CF.  I was tested before I got pregnant, but I don't know what I'd do if Caleb had it.  I'm one of those against abortion for myself kinda girls, but I'll be damned if I'm going to judge another woman for making whatever choice she needs to for herself and her family.

As for the doctor, I'm sure he meant to be giving you options and just had a very unfortunate way of doing it.
by Member on Apr. 26, 2007 at 11:23 AM
Welcome Heather!  My son Sage is 2.5 with CF. 
xoxo  Danielle
by Member on May. 30, 2007 at 1:47 AM
Hi, my name is Amanda and I have a 3 year old son with CF. He was diagnosed when he was 4 months old. I'm really glad that there is a CF group on cafemom b/c as alot of y'all know we can't really get the kiddos together and play like other kiddos. I'm glad we can still talk about daily struggles and new ideas!
by New Member on May. 31, 2007 at 4:24 AM

Hello. I was checking into groups here and stumbled onto this one.
Years ago, Feb. 14, 1995 to be exact, I had my son Cody. After a very easy pregnancy I had a scary birthing process with him and needed an emergency c-section. After a few days of not eating he was run through a series of tests and was found to have CF. We spent the first eight months in the hospital and he underwent numerous surgeries. I was so scared I didn't know what to do. When Cody was finally able to come home we had to have round the clock nursing which finally weaned to 8 hour nursing while I was at work. Cody was re-admitted to Johns Hopkins in Baltimore in August of 1996 with a GI bleed. We never could get everything under control. He passed away on December 1, 1996 while I held him in my arms and rocked him in his hospital room. The whole thing was surreal and unbelieveably peaceful. I cannot, to this day, believe that he is gone. 
I am not writing this to be a downer, I just want you to know why I am here. I still rally for CF research and raise money for the CFF through Great Strides. I also stay in touch with many families I have met throughout the years who are living with CF.   

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