Well I am about 4 months pregnant and my blood work finally came back. The downs syndrome and the spina bifida didn't come in. The test came back positive that I carry the gene for cystic fibrosis.... They want the father to get a blood test done to see if he carries the gene. He says its just the doctors way of making more money because I have insurance.... I don't know if he will get the test or not, I can't force him. What are the benifits of him getting tested or the cons of him not?
Is anyone out there carrying a baby with this? What plans or what are you changing to deal with this? Any other info would be greatly apperciated!
In my opinion, your husband is looking out for himself instead of your baby. If you both carry the positive gene, then your baby is at a high risk for having cystic fibrosis. CF is serious and is something I would want to be prepared for ahead of time. What was the point for you to get tested if he wont?
Well we are not married, hardly even seeing eachother. I have know him about 6 months and I am 4 months pregnant if that explains the situation. He wouldn't even talk about the baby until about a month ago and hes excited now. My doctor called me last night and told me what the test showed and said he would like the father to get tested and hope he is negative. When the doctor asked if I wanted those test done I didn't really know anything about any of them just that if the baby did have something I want to be prepared. I didn't know he would have to get tested. He hasn't said he wont do it, but he thinks its all about the doctor making more money...
This is my second child. I can't remember if I had this test when I was pregnant with her or not. If I am a carrier then it will always show up correct? It doesn't change right? I do know of one person in my extended family that has this. Its my grandma's sister's grandson....
The babys father really should have the test done caz if he is also a carrier of the cf gene your baby is more then likely to have cf. If he opts not to have it done the baby can be tested for it shortly after birth. There isn't much you can do besides prepare yourself emotionally..there is NO cure for cf at this time only treatments to try and make it better. 2 of my cousins have cf and they were both diagnosed with it right after birth...both their parents carry the gene and thats how they ended up with it! Best Wishes!!!
Even if he is a carrier, that doesn't mean that the baby will definitely have it, but I think there is a 25% chance. They will probably test the baby after it is born to find out for sure. There is nothing they can do in-utero but you can do your homework beforehand just in case this is something you will need to deal with.
There are a couple key points that other posters have noted, that I think are worth repeating:
>>Two abnormal genes are required to develop CF.
>>If the baby's father has the abnormal gene, your baby has a 1 in 4 (25%) chance of having CF.
>>There is no cure for CF, and no way to prevent your baby from developing it if s/he has two abnormal genes.
>>You can have your baby tested for the two abnormal genes at birth.
>>Therefore, the only reason to perform tests for CF while you are pregnant is so that you (and the father) can prepare yourself for the possibility that you are having a baby with CF, before the baby is born.
You can mentally prepare yourself now for this possibility, whether or not the father agrees to be tested!
Also, keep in mind that if he tests positive for the abnormal gene, you still won't know for certain UNLESS you have either amniocentesis or chorionic villus sampling (CVS) -- two tests you can have later on in your pregnancy. These procedures have a slight risk of miscarriage. If you plan to keep your baby no matter what, I'd advise against these procedures for the purposes of diagnosing CF pre-birth, as you are basically risking your baby's life for knowledge you will not be able to act on.
About 1 in 25 Caucasian people has the CF gene, and other races have an even lower chance of having the gene. Plus, we know that two carriers of the gene have a 25% chance of producing a CF baby with each pregnancy together. Taking these two statistics together, the following table shows how likely it is that your baby will have CF, assuming that you are a carrier, but not knowing whether the father is:
Father's Ethnic Background Baby's CF Risk
Caucasian -- 1 in 100
Ashkenaz Jewish -- 1 in 116
Hispanic -- 1 in 196
African-American -- 1 in 260
Asian -- 1 in 600
This might be enough information for you to feel prepared without having to have the father tested, or having amniocentesis or CVS.
i am a carrier too. there is no family history what-so-ever, so it was a big surprise. my DH went in right away and tested negative thank goodness. it is true that if both parents have the gene there is a 25% chance of passing it on. what else i learned that really surprised me is that depending on your decent, you could have a 1:32 chance of having the gene. i think it is very important that he gets tested. you don't want to wonder until you deliver, plus CF can be very involved depending on the severity. once you know, you will know and you can go one from there. best wishes!
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Married October 02
DS Caden Grey June 03
DS Morgan Keenan March 05
C-Section Aug 1st 08 with baby BOY #3
OMG!!!!!!!!!!!
Your CF status will never change, if you are a carrier now you always will be. I think alot of the reason the drs like to know, is one because not all people decide to keep the baby, and also becasue alot of times babies who have (or in this case might have) problems like that are best born by c-section. I got really scared when they gave us that test, i suppose mine must have been negative, they never said anything to me about it. But, I went and read some of the posts on the CF board on here, and some of them did scare me, but alot of the people on there have children or they themselves have it and have lead fairly normal lives. So, it's not hopeless if they have it, and like they said, only a one in four chance. As for the baby's daddy not wanting the test because the dr is making money of it, so what? He's not paying for it! And your baby should be far more important to him than how much the dr. is making! Good Luck!
I don't know how I feel about this testing. With my first two I didn't have it and this (our third) I did have the screening. I am a carrier of the CF gene. Now this being our third child together I didn't think we were so lucky to have two healthy children.
My husband had the test and was negetive, sometimes I feel like they force you to take these tests...what am I going to say, don't worry about, one more worry IMO.
My DH doesn't have health insurance, the test was $465.00 just some more things to worry about.
Good Luck, I suppose you can't force your SO to test, but if his insurance covers it, it's a simple blood test and a lot of ease off your mind...
He doesn't have insurance, and we are not married so mine wont cover him. I don't know... I guess I must not have had this test with my daughter and luckly her dad was not a carrier. And if there is nothing to be done now and they can test the baby after birth, who will be covered by health insurance then I guess theres no sense in pushing him to do the test. I will just mentally prepare myself for the worst and if its not that then it will be another reason to celebrate. I will keep (her) no matter what, 30 years doesn't seem long enough though! I talked to my grandma, and her sister's grandson has it and he is around 20 or 21 and doing well. I guess time will tell. Thank you everyone who posted to get me up to speed on what I am dealing with.
My best friend's sister just found out that she is a "CF Carrier". Her husband was tested and everything turned out okay for him. The doctor said the chances are excellent that their baby will be just fine.
We found at that our child had cf shortly after he was born. Had a perfectly normal pregnancy. They don't do testing in our area to see if we're carriers, so we were shocked. If you can't get your partner tested, then you'll just have to decide if you want your child tested either before birth or after. I'm glad we found our soon after our child was born so we could begin treatment immediately -- he's used to his daily treatments and we've got it down to a routine.
I know of others who found out later. After another child was born with it. I
Cystic Fibrosis 
