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My newborn tested postive for Cystic Fibrosis ???? |
I have to add that this has been one of the most difficult moments in my life. Yesterday, my pediatrician called me up to inform me that she had received my newborns tests results back from the hospital (standard tests that they do to all babies as soon as they are born) and that my baby tested positive on the Cystic Fibrosis screening.She says that this does NOT neccesarily mean that he has the disease he could just be a carrier, but further tests need to be done to confirm this. Next week the baby will be having a sweat test.What confuses me about all of this is that when I was pregnant I was informed that I was a carrier of CF. Later my husband was tested and they confirmed that he was a carrier of CF as well, but REASURED that we had NOTHING TO WORRY ABOUT because the chromosomes that we had abnormal did not match (or something like that). Only for this reason I did not have an aminiosintesis to confirm that my baby had CF. Anyone with any experience with this or CF? I do have some experience with CF. When my son was also a newborn they tested him and he had to do the sweat test too which does not harm then at all. Thankfully he was negative. My brother-in -law does have CF and has had it since new born he will be 30 years old this March. I do know that it is a very difficult disease but there is also different cases on how bad they have CF. I am not sure what all you want to know but you can feel free to contact me if you have more question. My prayers are with you:) I'm so sorry to hear about this! I don't know anything about it but wanted to let you know I'll be thinking of all of you and include you in my prayers. God bless and good luck! Here are some links with information on CF.. i have just studied about cystic fibrosis that when 2 parents are diagnosed as carrier, it is possible for their child to inherit that abnormality. cystic fibrosis falls under AUTOSOMAL RECESSIVE INHERITANCE. if your baby is male, there's a bigger chance he might manifest the disease. i recommend you undergo the sweat test. it's more common in europeans. I did have friends, quite a while ago, that did lose a daughter to CF, she survived 13 years, was told max 5-6 years.Sorry, you wouldn't want to know that part, but as I said ,it was a while ago, several years, and they do so much more now.You need to be confirmed 1st, and the things they can do these days is unbelievable. get all the follow up tests done, make sure whats happening before you start getting in a frenzy. Hope all goes well. You need to get all the testing done though, it is like most things, you can be a carrier, but not deliverer. I have cystic fibrosis and I do not know my gene types but CF patients actually have 2 cf genes. One from the father 1 from the mother. It doesn't matter if they match or not. so in that, your doctor was on crack or something. MOST of us have the 2 genes are the same but there are those with 2 different genes. Also If your child does have CF, with advancements in todays medical world your son can live to be married and have grandchildren. I know a cf woman who is almost 70 and going strong. If your baby does test positive in the sweat test be sure to get a referral for your local cystic fibrosis clinic. CFF.org will have a list of the closest clinics to your area. Also there is an awesome support group on myspace |
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CF is an inherited disease caused by an abnormal protein that does not allow the normal passage of chloride (which, along with sodium, makes up salt) into and out of certain cells, including those ... Girls with CF should be able to get pregnant. Men with CF are sterile though. ... |
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