My baby doesn’t have CF but the newborn screening results showed that he/she is a carrier. What does that mean for my baby?
If your baby’s newborn screening (NBS) results showed that he or she has one CF gene mutation and the sweat test was negative (normal), your baby does not have CF. A person must have two CF gene mutations to have CF.
These test results, however, do mean that your baby is a CF carrier. It will be important for your child to know that he or she could pass the CF gene mutation to his or her children. When your child is older, you can discuss the CF carrier status. His or her partner might think about getting CF carrier testing if and when they plan to have children.
If you or your child is a CF carrier, you should also tell blood relatives that they could be carriers of a CF gene mutation, so that they and their partners can decide if they would like to be tested.
The CF Foundation’s fact sheet “My Baby Is a CF Carrier” explains what it means to be a carrier of a CF gene mutation.
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What does it mean for my child’s future if he or she is a CF carrier?
We encourage you to consider talking about this with your child when you think that he or she is old enough to understand genetics and what it means to be a CF carrier.
You and/or your child might discuss meeting with your child’s doctor, a genetic counselor or genetics nurse specialist when you are ready for that conversation.
Genetic technology is moving at a very fast pace. There is likely to be much more known about CF and genetics when your child is ready to have children.
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What does it mean for us parents if the newborn screening results show that our baby is a carrier of CF?
If your baby was found to have one CF gene mutation, it means that either you or your partner is definitely a CF carrier. However, it is also possible that both of you are carriers, even if your newborn baby does not have CF. If you both are carriers there is a one in four chance with each and every pregnancy that your next child will have cystic fibrosis.
If you both are carriers there is a 1 in 4 chance with each and every pregnancy that your next child will have cystic fibrosis.
DNA or genetic testing can help you learn more about whether one or both of you are CF carriers. Genetic counseling can help you understand what it means to be a CF carrier.
When one parent has had a positive CF carrier test and the other parent has a negative CF carrier test, their chances of having a child with CF in the future is very low, but not zero.
More than 1,800 different mutations have been found on the CF gene. Routine CF carrier tests do not check for every possible mutation, only the most common.
To learn more about your status as a CF carrier, talk with your health care provider. You and your partner can talk with your doctor about having a blood test to get more information about your carrier status and your chances of having a child with CF in the future.
A genetic counselor can help you learn more about CF carrier testing and arrange for you to be tested. The CF Foundation-accredited care center where the baby was sweat tested may also offer CF carrier testing.
If you are not sure if your baby is a CF carrier, ask your baby’s pediatrician or health care provider.
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