Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 This group is very large, so now I realize I'm not alone....My daughter was born 4 months ago and shortly after diagnosed with cystic fibrosis. She had a meconium ileus that required a 15 day NICU stay, but no surgery. We were very surprised by the diagnosis, and I can't honestly say we're used to the idea yet. On the up side, her early diagnosis let us start nutrition therapy early and she is quite plump. Her problems so far have been overwhelmingly GI related. She has had liver problems and was also diagosed with alpha-1 antitrypsin deficiency. Talk about a double whammy!!! None of the doctors in our center have ever seen the 2 defects together, but we have traveled to another city to see a doctor that has. He still wasn't able to give us any kind of idea what we might expect. A1AT deficiency is as variable as CF, so the combination is impossible to predict. Right now her liver is improving, and we hope it continues. Is there anyone else out there with both defects? I'd love to hear from you. I went back through some of the messages and read the tips you wrote. As a new person these help. I look forward to contributing in the future. Keeley, mom to 2.5 y/o nocf, and 4 months wcf Quote Link to comment Share on other sites More sharing options...
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