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FI and I are both CF carriers
Just wondering if anyone else experienced this during pregnancy? During the routine blood screen, they discovered I was a carrier for Cystic Fibrosis, FI decided to get tested to, and his carrier test came back positive as well. We are not interested in going through amnio or CVS screenings due to the number of false positives, and the fact that no matter what, we will love and care for this baby for as long as we live.
So my question is this... has anyone had both parents test positive for CF? If so, what was the outcome for LO?? Positive for CF, carrier, or nothing??
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Re: FI and I are both CF carriers
My husband and I are currently in the same situation. During routine blood screenings I came up positive for the gene and then a few weeks later so did my husband. The worst part was that before we conceived I asked if I needed genetic counseling because of my background and because my husband's mother was adopted. I was basically told that I was being silly and worrying too much. I think that's been the biggest lesson in all of this. Never let anyone tell you to go against your gut. We have decided to go ahead with a CVS because I want to be ready when the baby is born, just in case. I want a team of health care professionals there and waiting as soon as the baby is here.
I don't know if you know the stats but if both parents are carriers then there is a 25% chance that the baby will have cystic fibrosis, a 50% chance it will be a carrier, and a 25% chance that it will be neither. Depending on the mutations you and your husband have the disease can be more or less severe. Unfortunately, my husband and I discovered we carry the more severe form of the gene and our child would have "classic" cystic fibrosis. From your blood tests alone you can know what your specific mutation.
Just like you my husband and I have decided that we will care for this child no matter what. The CVS is more for preparation. Good luck for you and your baby. Cystic fibrosis is not the immediate death sentence it once was. Children are living longer and healthier. Be strong. I will keep you in my prayers.
My husband and I are both carriers of the gene for Spinal Muscular Atrophy. The stats are similar to CF. 25% chance with each pregnancy of the baby having the disease. We have two boys. Adyn is healthy and Owen has SMA.
We had never even heard of the disease before Owen got diagnosed. We have no family history whatsoever. It is very scary knowing that you can pass on a horrible disease to your child. I would recommend the Amnio and CVS. Being prepared and well educated will be a strength if your child has CF. We had a sick baby and at the same time had to learn all about SMA. It was extremely scary and stressful. Best of luck in whatever path you choose.
Yeah, where did you get the idea about the false positives?
Your DD will get the exact same test after she is born (basically a detailed karyotype). Would you like to know now and be prepared or find out later and see her go though lots of invasive tests?
Both me and my dh are carriers and unfortunetely my ds has CF. Your baby has a 25% of having CF and a 50% chance of also being a carrier so odds are you have nothing to worry about. You can always do some research to see if you are carriers of the markers that are associated with more severe forms or milder cases. My son has very mild CF and if it hadn't been caught on the newborn screen we wouldn't have any idea. He gets asthma with colds so we use a neb but that is about it.
While I very much so appreciate all of the input on the prenatal testing, unfortunately that was not what I was asking about. I want to make myself understood by saying that we are NOT doing amnio or CVS and that is a definate decision. I have been known to have seizures and fainting spells when having any work done involving needles, so the less, the better. ALSO, my mother (LO's grandma - obviously) has been a special needs and high risk preschool teacher for 27 years, and is somewhat of an expert. Therefore, no matter what the chromosomal outcome of our LO is, we would rather find out once she's here than ahead of time. I feel in my heart of hearts that she will not have CF, call it crazy, call it mother's intuition, call it what you want, but I'm not too terribly concerned.
As far as the false positives, I live near one of the best medical hospitals on the east coast, and the genetic counselors are the ones who informed me of the rate of false positives, as well as miscarriage derived from those tests... another big fat reason that we are not interested.
Anyways... thanks for the input, but we are pretty set on what we've decided is best for us and our baby. However, I would still love to hear the outcome of the LO for people in this similiar sitation.
I rally think you might have misunderstood about the false positives- there is no such thing as a false positive from CVS/amnio. You couldn't get a CVS at this point anyway, so that is out of the question.
If I were you I would still prepare for a CF baby at birth by lining up needed specialists (like the LC as a PP mentioned) and then just be happy if it is all unnecessary.
Hi - DS and I are both CF carriers, and we found out after I got pregnant. We knew we wanted to do the CVS, but I had no idea what (if anything) we would have done if LO inherited both genes
We went ahead with the CVS test, and thank G-d, DS is just a carrier.
I hope that everything will be OK for your LO as well... I think you should stay positive and believe that your LO will be healthy. Hugs!!
My husband and I are both carriers, we were both tested before I conceived. It was the worst news of my life, but we decided to try the "natural" way to conceive instead of PGD. It was a risk, and thank God things turned out okay. My son is just a carrier. We had a CVS test done to find out, we wanted to be prepared. The wait for the results was painful! If we were to have another baby, we will be doing PGD. I want to actually enjoy my next first tri.
So yes, things turned out well for us.