Anyone with experince with a postive on the newborn blood screen for CF

mzscott81

My daughter was born at 34 weeks 3 days due to my water breaking. She was in the NICU for 13 days. I was so happy when she was able to come home last Tueday. Then the next day, I got a phone call from a large teaching hospital here, saying they got my daughters newborn blood screen results and she tested abnormal for CF. They want to run more tests (a sweat test) on her, but she has to be 8lbs for that test. She is only 5lbs 6oz now. Well then the following day we had her first doctor's appointment, he had the test results aswell. He looked at them and said, that he doesn't want to wait to get her in with the specialist and that he was going to go ahead and refer her now, that they had to be able to test her now some how. He also said that if she does test positive that he was going to have my son tested as well. My son has been having real bad problems with breathing and having stuff in his lungs all this year and the doctor said that could very well expain what is wrong with him. I have never really heard of CF, and now not 1 but 2 of my children my now have it.

 Has anyone else had they child test postive on the newborn screening and what was the outcome and how has things gone?

Bippy798

Sorry but I am not sure what CF is. I assume that means I don't have any experience with it. I hope everything turns out ok for you.

mommamorris

CF=cystic fibrosis? i don't have any experience with that specifically... but from what i vaguely remember i think you guys would have to be carriers. it was something they tested *us* for early on when i was pregnant just to see if it was possible the baby would have it. that's the end of my knowledge on that subject. (and i could be mis-remembering.)

we did however have a positive on the newborn screen. she tested positive for some sort of thyroid issue... then for some sort of adrenaline problem... then for something else. she actually had 4 newborn screens!! and they were all false positives.... if the sweat test is rather invasive or traumatic i would ask for another blood test to be sure. (most all newborn screens are sent to one or two clearinghouses- so it's likely there could be a mistake on many of them if we had the experience of 3 mistakes!) if the sweat test isn't a big deal i'd go ahead with it.

best wishes to you and your lo's... i pray they're healthy and happy!

E&RMommy

I am so sorry you are going through this.  I hear there are a good number of false positives. 

Did you not get tested before you were pregnant to see if you were a carrier??

mzscott81

We were never tested! The doctor did tell me that she tested positve for the tyroid one too, but he said that that was more than likely from her being preemie, but he was refering her to a specialist  for that too.

thh

My son had a false positive for a metabolic disorder that ended up being b/c he was getting his nutrition from an IV.

 My sister's daughter had a false positive for CF -- and it took 2 or 3 follow up tests to rule it out, but in the end, she's fine. 

 (Yes -- very odd that we both had false positives, but it happens more often than you hear about)

Kaytee1206

My daughter also had a false positive for a metabolic disorder.  The second test came back totally normal.

MarriedBestFriends

CF, I believe, can be diagnosed with a DNA test. I am a carrier- H is not (at least for the 1000+ mutations that they are aware of). We were tested when I was pg. I wish you the best and know that there are treatments and people with CF can live a very long and happy life!