Hi, my name is Jennifer. I am a 24 year old with CF and am trying to conceive. I have been through the genetic testing hoops that you are now facing. Since I have CF, both of my genes are positive. My husband got the genetic testing and both of his genes are negative. Therefore, our baby has less than a 10% chance of having CF. However, our baby would have a 25% chance of being a carrier with no symptoms.
My recommedation for you is:
1. Since your husband is not able to get tested, I would recommend getting both of his parents tested for the gene. That would probably be the next best thing. Hopefully, you know both of his parents. If you don't or only one consents to the testing, the test will mean nothing. ONLY ONE PARENT HAS TO CARRY THE GENE FOR HIM TO BE A CARRIER. TWO PARENTS MUST CARRY THE GENE TO HAVE A CHILD WITH CF. A CARRIER OF THE GENE USUALLY DOES NOT KNOW UNTIL IT IS TOO LATE! THAT IS HOW I WAS BORN WITH CF. MY FAMILY HAD NO HISTORY OF THE DISEASE.
2. If you can't do the testing on both of his parents, you could have his siblings tested. However, if for example his sister is negative to carry the gene, that doesn't mean he doesn't care the gene. IF MY HUSBAND AND I HAVE TWO CHILDREN, EACH ONE HAS A 25% CHANCE OF CARRYING THE GENE. ONE MIGHT - ONE MIGHT NOT.
THE BEST CHANCE WOULD BE TO GET HIS PARENTS TESTED.
But please don't get upset. Only 1 out of 32 white Americans carry the gene. Only 1 out of 62 Hispanic carry the gene. And only 1 out of 78 Blacks carry the gene. I think it is unlikely your baby will have CF. He or she may be a carrier. But I highly doubt your baby will have CF. I will always offer you and your husband support.
Jenny