My sons doctors contacted us when he was two weeks old and said that the newborn screening was borderline for Cystic Fibrosis. He then immediately sent us for the sweat test which was positive. I am so glad they do that now. We know right off hand wether he has it or not.

my daughter's CF was caught by newborn screening. I don't think that we would've had any idea, although we do have CF in our family. Her doc's started treatment immediatly after a genetics test, she was too small for the sweat test. She was put on enzymes, Xopenex, and Pulmicort that week. I heard that they were going to mandate the test nationwide. That would be AWESOME

That would be awesome. I knew I was a carrier but did not know if my husband was. Also there isn't CF in the immediate family that I would know of.

My daughter was also diagnosed from the newborn screening. The results came back positive so they sent her for multiple sweat tests with no luck. Finally genetic testing was approved through our insurance and it was confirmed. Thank goodness, too. She wasn't gaining any weight. She was born 6lbs 10 oz and went down to 6lbs and stayed there for weeks. She finally got the enzymes at 6 weeks. Phew! What a miracle. She is not 4 months and weighs almost 12 lbs. Thank God for science. Seriously.

My daughter unfortunately was not screened at birth regardless of the fact that I tested pos. as a carrier, b/c my husband tested neg. However, the carrier test only tests for the most common strands. I've since heard that Texas is the only state in which newborn screening is not mandatory when a mother test pos. I was also told by my OB that if my husband was neg. I had nothing to worry about.
Reagan was hospitalized at 14mo. for 19 days. She had a really bad infection and couldn't come off of oxygen. She was diagnosed on her forth or fifth day and was put on IV antibiotics. They did an infant PFT before she left and her score was only a 57.
It makes me so angry that all of this could have been avoided if she had been screened at birth. I'm thinking about contacting a lawyer. What do ya'll think?

My daughter who is now almost 3 had a newborn screening test. I'm so glad they do that because she wouldn't be here today. She tested positive at 1 week and required oxygen right after birth. I'm glad the testing is around for newborns because the earlier they find it the better chance for a child. I've never heard of cf until she was diagnosed. I don't see what it would hurt to test every newborn. Me and my husband had no idea we were carriers, and I'm sure a lot of other people are the same way. I thank all that has brought cf newborn screening, and I hope they make it manditory everywhere.

you know, reagansmom, I've heard a lot of stories like that from mothers in our clinic. A mohter was tellin g me not ot long ago that her neice and nephew had CF and she had asked for her child to get the screening (this was a few years afo before it was mandated here) and insurance turned her down fo rthe screen! She said that she KNEW that something was wrong with her baby and that she had a feeling it was CF, although some symptoms were different than that of her neice and nephew. The doctor refused and said that it was not CF. The kid went downhill for almost a year and she couldn't take anymore and took the kid to a different doc who promptly tested the kiddo and he turned out positive. The mother was understandably furious. I'm not sure if she took legal action, but I think I would. Wouldn't the test cost less than the possible CF getting out of hand???
~hugsnkisses

I apologize for my sparatic typing. I type fast and don't proofread (blush)
~hugsnkisses

I am in Australia and screening at birth has been done since 1994. My daughter tested neg at birth and was seat tested at 16 months and has cf. They only test for 12 mutations though, my husband and I have had the genetic tests which tests for a further 33, my husband has 1 of those but I dont. Dont know why they dont est for the whole 45 at birth, has something to do with cost and also done at different labs in australia. May have got diagnosis earlier for my daughter and she wouldnt have had to go through what she has.

Sorry about the bad spelling not very good at typing

let me correct myself, screening has been done in australia since 98

I really hope that testing becomes mandetory everywhere. My son has the #1 and #3 most common mutations, if he was tested at birth 6 years ago he could have been getting treatment all this time. It just became mandatory in Illinois this year.
If I didn't push for the test ,because of my research I found he had several of the symptoms, my son would still not be diagnosed.