daughter tested + for CF

[daycarewoman]

Help! I'm so scared. <img src="i/expressions/face-icon-small-sad.gif" border="0"> My 22 year old daughter is pregnant. About 8 weeks or so. She got a phone call from her dr's office this morning. They said she tested + for CF. How can this be? She's always been very healthy, never any lung problems. What does this mean for her, and for her baby? My daughter is caucasian, and her husband is asian. He is going to be tested today, but I am assuming we won't get any results today. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Please........any information that you can give me would be GREATLY appreciated.
Thank you,
Chris

 

[anonymous]

Hi,

I know it can be overwhelming. What I think is really, really, important is that it sounds like this was just a screening to see if your daughter carried the gene. They do standard testing now for the pregnant women. My guess is that she tested positive as a having one of the genes.. IT TAKES TWO GENES TO GET CF ALMOST ALWAYS..I think there is one exception... Being a carrier does not mean you have the disease, you have to link up with someone else who is a carrier as well. Even then there is only a small percent, (can't remember how much) of the child having CF.

Find out more information first. First find out if she just has the gene or if they found two different genes all together. That makes a huge difference, and second, if your daughter does have CF, there are so many treatments available.

We are here if you need us, I know it is scarry and overwhelming but take it one step at a time. Like I said to me, it sounds like from what you said it was more of a way to make sure that the new baby does not have CF and not your daughter, but I could be misunderstanding what you are saying.


You will be in my thoughts and prayers, please give us an update,
Love
Jennifer 33 w/CF and Addison's

 

[Mockingbird]

Wow. Ain't that a kick in the head. =-) If the father is a carrier, tan the baby has a 50% chance of having CF, but if the father isn't a carrier (which is probably more likely) the baby has a 0% chance. As far as your daughter goes, if she hasn't found out until now, then she's obviously very healthy.

lots of us live with CF, and we can tell you from experience it's not the end of the world. People survive with this disease every day. <i>Children</i> survive with this disease every day. If a child can survive with it, i'm sure a 22 year-old woman with a mild case shouldn't have too much of a problem. =-)

 

[JazzysMom]

Before you get too worked up, I think you need to clarify if she HAS CF or if she is a CARRIER of the CF gene. IF she has CF & hasnt had any symptoms so far that is great. I was diagnosed at 7 & for the most part was very healthy. I became a proud Mommy when I was 30. IF the daddy is a carrier & Mom is then the focus goes on the baby & whether the baby will have CF. Please clarify/verify the testing.....I think that because of how far along the pregnancy is that the test was to determine if she is a carrier as most GYN/OB doctors do now adays. Please let us know so we can offer support no matter which way it needs to be!

 

[anonymous]

I was just going to ask the same question as melissa. Has she tested + as a CARRIER for CF (which means she carries only 1 mutation) or has she tested + as someone with CF which means she has 2 mutations?

Clairification on that might make this question and answer a bit more simple.

 

[daycarewoman]

My daughter just called. She was finally able to talk to the nurse. She tested + for the gene. She does NOT have CF. Her husband is 3/4 asian, and 1/4 hispanic. The nurse said that his chances for carrying the gene were 1 in 45 to 1 in 90. Then if he is a carrier, the baby would have a 1 in 4 chance of having CF. She feels a little better about it. I think they do to much testing. If the baby has CF, then we will all deal with it and take care of the baby as best as we can. Why worry for months about something that you can not change? Her husband will be tested today. I hope they will get the results soon. I have 3 children and have never been told that I have the gene. Does that mean it comes from my husband? Not that it matters. Should my other 2 girls be tested for the gene before having children? Melissa, who is pg is 22. Lindsay is 25, married and trying to conceive. Should she and her husband be tested first? My youngest daughter, Kaitlyn is 8. Is she at risk of actually having CF.
Thanks to all who have replied. I appreciate all of the information that you have given me.
Chris

 

[JazzysMom]

Many people want to know if a baby has a potential illness. Some might choose to terminate the pregnancy & others just want to educate themselves about the illness. Most CF diagnoses are with no family history. As time & testing continues this will decrease. No there is no sense in worrying about things, but preparing yourself as much as possible is important. Yes you should have your other children tested. When it comes time for them to be parents they should know (my personal opinion) so they know if their mate needs to be tested. Please remember that any babies born knowing they have CF or finding out shortly after birth is a good thing. Not that they have CF, but that the news comes so early that care plans can be implemented right away. Good Luck!

 

[IG]

That's good news. The gene could either come from you or your husband, unless you yourself are tested then there's no way of knowing who it came from [unless you have a history of CF or young children/infants who died unexplainably on your side of the family a few generations back which would be a good indicator] (my grandmother had an aunt that had 5 or so children die when they were younger, about 10 years ago a descendant of her aunt had a child with CF so.. you never know.) Since your one child does have the CF gene, I'd think it'd be a good idea to get all of your children tested since although I'm sure the percentage isn't huge, there is a chance that they could possibly have children with a male who is also a carrier. I'd personally have the couple who are trying to conceive tested first that way they have all the facts and know the risks if in fact they are carriers.

The way genetics happens is a tricky thing. If both you and your husband had children [which you obviously do] and are both carriers of the gene each child would have [1/4 of a chance of having CF, 2/4 of a chance of NOT having CF BUT carrying the gene, 1/4 of a chance of NOT having CF and NOT carrying the gene] the same percentages, and your daughter just got lucky and happen to be a carrier. So there is a chance that Kaitlyn might have CF [though I'd personally doubt it, especially if she's in good health] but it's not a bad idea to get her tested for the genetic mutation in case she wants to have children some day anyway. Hope this helps and isn't too confusing.

 

[anonymous]

The nurse said that his chances for carrying the gene were 1 in 45 to 1 in 90. Then if he is a carrier, the baby would have a 1 in 4 chance of having CF. THESE STATISTICS ARE CORRECT.

She feels a little better about it. I think they do to much testing. If the baby has CF, then we will all deal with it and take care of the baby as best as we can. Why worry for months about something that you can not change? IT'S NOT NECESSAIRLY THAT THERE IS ANYTHING TO CHANGE BUT RATHER TO MENTALLY PREARE FOR, RESEARCH, HAVE APPROPRIATE DOCTORS AND CARE LINED UP FOR THE CHILD AND KNOW HOW TO BEGIN TO HANDLE THE DISEASE.

I have 3 children and have never been told that I have the gene. Does that mean it comes from my husband? EITHER YOU OR YOUR HUSBAND COULD BE CARRIERS, THE ONLY WAY TO KNOW FOR SURE WOULD BE TO HAVE BOTH OF YOU TESTED. FROM A CURIOSITY STANDPOINT, THAT MIGHT BE A GOOD THING TO DO. MEDICALLY SPEAKING, IT DOESN'T MATTER WHO YOUR DAUGHTER GOT THE CF GENE FROM, SHE HAS IT.

Should my other 2 girls be tested for the gene before having children? YES, DEFINATELY. IT WOULD BE EASIER TO TEST YOUR DAUHTERS BECAUSE PROVIDED THAT ONLY ONE OF YOU WAS THE CARRIER (EITHER YOU OR YOUR HUSBAND BUT NOT BOTH OF YOU) THEN IF ANY OF THE GIRLS WERE CARRIERS, IT WOULD BE OF THE SAME CF MUTATION AS YOUR CURRENTLY PREGNANT DAUGHTER. DEPENDING ON THE RESULTS OF YOUR DAUGHTERS' TESTS, THEN IT MIGHT BE NECESSARY FOR HER HUSBAND TO BE TESTED AS WELL. BUT YES, TESTING IS A MUST IN A CASE LIKE THIS!

Should she and her husband be tested first? YES YES YES!

My youngest daughter, Kaitlyn is 8. Is she at risk of actually having CF. ONLY IF YOU AND YOUR HUSBAND ARE BOTH CARRIERS OF A CF MUTATION.

Thanks to all who have replied. I appreciate all of the information that you have given me.
Chris

Welcome to the site. I hope writing in caps doesn't seem hostile, it was the easiest way I could see to answer the questions.

 

[anonymous]

Thank you all for sharing your knowledge with me. I will tell my other daughter who is trying to get pg to get tested before going any further. The next time my 8 year old needs blood work done, I will ask her doctor to include the test. I agree that being prepared is a good thing.
Thank you again,
Chris