Newborn screening for CF

[marisalynn]

Hey everyone!
I have been told by several people that when their babies were born, the initial newborn screening showed positive for CF, and after some additional testing, it was showed to be a false-positive, and that the child didn't have CF.
Well, I am wondering if it is that common to have a false positive on this test, if it is more likely to have a false positive when one of the parents of the baby has CF.
My husband was tested as a carrier with the basic test, but the comprehensive test was very expensive and his insurance didn't pay for any of it. The basic test came back negative, but I am still really nervous about our baby having CF.
So basically, my question for the people in here who have had children, did you babies have a positive result to the newborn screen for CF?
Thanks in advance!
Marisa RN, 23w/CF

 

[marisalynn]

Hey everyone!
I have been told by several people that when their babies were born, the initial newborn screening showed positive for CF, and after some additional testing, it was showed to be a false-positive, and that the child didn't have CF.
Well, I am wondering if it is that common to have a false positive on this test, if it is more likely to have a false positive when one of the parents of the baby has CF.
My husband was tested as a carrier with the basic test, but the comprehensive test was very expensive and his insurance didn't pay for any of it. The basic test came back negative, but I am still really nervous about our baby having CF.
So basically, my question for the people in here who have had children, did you babies have a positive result to the newborn screen for CF?
Thanks in advance!
Marisa RN, 23w/CF

 

[marisalynn]

<p>Hey everyone!
<p>I have been told by several people that when their babies were born, the initial newborn screening showed positive for CF, and after some additional testing, it was showed to be a false-positive, and that the child didn't have CF.
<p>Well, I am wondering if it is that common to have a false positive on this test, if it is more likely to have a false positive when one of the parents of the baby has CF.
<p>My husband was tested as a carrier with the basic test, but the comprehensive test was very expensive and his insurance didn't pay for any of it. The basic test came back negative, but I am still really nervous about our baby having CF.
<p>So basically, my question for the people in here who have had children, did you babies have a positive result to the newborn screen for CF?
<p>Thanks in advance!
<p>Marisa RN, 23w/CF

 

[petnurse]

I may be reading your question wrong. I am not sure if you only want answers from parents that have CF or not I do not have CF, but my son does. He had a positive newborn screen (2 Positive IRT levels), 2 positive sweat tests, but we have not had the blood test on him yet.

 

[petnurse]

I may be reading your question wrong. I am not sure if you only want answers from parents that have CF or not I do not have CF, but my son does. He had a positive newborn screen (2 Positive IRT levels), 2 positive sweat tests, but we have not had the blood test on him yet.

 

[petnurse]

<p>I may be reading your question wrong. I am not sure if you only want answers from parents that have CF or not I do not have CF, but my son does. He had a positive newborn screen (2 Positive IRT levels), 2 positive sweat tests, but we have not had the blood test on him yet.

 

[mamaScarlett]

Its common for the routine newborn screening to come up positive if the baby is carrier. If you have Cf, asssuming your husband is definitely not a carrier, your baby will definitely be a carrier too since you passed on one of your genes to him or her.
If you passed on one of the most common mutations then the state type sponsored newborn screening tests will flag it. Further genetic testing would show that the baby is only a carrier and doesn't have 2 genes. (again, assuming here that your husband is not a carrier)
My daughters screening did not come back positive, which indicates that she probably got my rarer mutation that would not be picked up by the 'most common' test they usually run.

 

[mamaScarlett]

Its common for the routine newborn screening to come up positive if the baby is carrier. If you have Cf, asssuming your husband is definitely not a carrier, your baby will definitely be a carrier too since you passed on one of your genes to him or her.
If you passed on one of the most common mutations then the state type sponsored newborn screening tests will flag it. Further genetic testing would show that the baby is only a carrier and doesn't have 2 genes. (again, assuming here that your husband is not a carrier)
My daughters screening did not come back positive, which indicates that she probably got my rarer mutation that would not be picked up by the 'most common' test they usually run.

 

[mamaScarlett]

<p>Its common for the routine newborn screening to come up positive if the baby is carrier. If you have Cf, asssuming your husband is definitely not a carrier, your baby will definitely be a carrier too since you passed on one of your genes to him or her.
<p>If you passed on one of the most common mutations then the state type sponsored newborn screening tests will flag it. Further genetic testing would show that the baby is only a carrier and doesn't have 2 genes. (again, assuming here that your husband is not a carrier)
<p>My daughters screening did not come back positive, which indicates that she probably got my rarer mutation that would not be picked up by the 'most common' test they usually run.

 

[NancyLKF]

Hi. I don't have CF, but my daughter does. Most newborn screens that are positive for CF are false positives. It is about 90% actually that are false. Sometimes it is because the baby is a carrier. In my state they automatically test newborns who screen positive for the more common mutations. So we knew right away that my daughter had it, regardless of further testing, because she has two copies of DF508. My second daughter had a clean newborn screen, but she is still is a carrier. Our CF doctor told me to expect a positive newborn screen and that it wouldn't mean she would have CF - because of that high occurance of false positives.
 
 

 

[NancyLKF]

Hi. I don't have CF, but my daughter does. Most newborn screens that are positive for CF are false positives. It is about 90% actually that are false. Sometimes it is because the baby is a carrier. In my state they automatically test newborns who screen positive for the more common mutations. So we knew right away that my daughter had it, regardless of further testing, because she has two copies of DF508. My second daughter had a clean newborn screen, but she is still is a carrier. Our CF doctor told me to expect a positive newborn screen and that it wouldn't mean she would have CF - because of that high occurance of false positives.

 

[NancyLKF]

<p>Hi. I don't have CF, but my daughter does. Most newborn screens that are positive for CF are false positives. It is about 90% actually that are false. Sometimes it is because the baby is a carrier. In my state they automatically test newborns who screen positive for the more common mutations. So we knew right away that my daughter had it, regardless of further testing, because she has two copies of DF508. My second daughter had a clean newborn screen, but she is still is a carrier. Our CF doctor told me to expect a positive newborn screen and that it wouldn't mean she would have CF - because of that high occurance of false positives.
<p>
<p>

 

[LouLou]

The only way to rule out any possible chance of your child having cf is to have genetic sequencing which will detect over 1000 mutations. Ambry makes a kit that you can take with you to delivery where the nurse can collect some cord blood to be sent off. Your DH should take the package while you are recovering to a UPS/FedEx box to send it off for processing.

Otherwise you can wait until you feel up for taking your little one to a cf center for this test but option 1 seems like a lot less hassle and less exposure to germs for you and babe.

The test in your state is either a very small panel test testing for 29 mutations or a test that looks to see if the baby's IRT level is elevated. My son past newborn screening (IRT level in PA) but was found to have two mutations.

 

[LouLou]

The only way to rule out any possible chance of your child having cf is to have genetic sequencing which will detect over 1000 mutations. Ambry makes a kit that you can take with you to delivery where the nurse can collect some cord blood to be sent off. Your DH should take the package while you are recovering to a UPS/FedEx box to send it off for processing.

Otherwise you can wait until you feel up for taking your little one to a cf center for this test but option 1 seems like a lot less hassle and less exposure to germs for you and babe.

The test in your state is either a very small panel test testing for 29 mutations or a test that looks to see if the baby's IRT level is elevated. My son past newborn screening (IRT level in PA) but was found to have two mutations.

 

[LouLou]

The only way to rule out any possible chance of your child having cf is to have genetic sequencing which will detect over 1000 mutations. Ambry makes a kit that you can take with you to delivery where the nurse can collect some cord blood to be sent off. Your DH should take the package while you are recovering to a UPS/FedEx box to send it off for processing.
<br />
<br />Otherwise you can wait until you feel up for taking your little one to a cf center for this test but option 1 seems like a lot less hassle and less exposure to germs for you and babe.
<br />
<br />The test in your state is either a very small panel test testing for 29 mutations or a test that looks to see if the baby's IRT level is elevated. My son past newborn screening (IRT level in PA) but was found to have two mutations.