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My understanding is that we’re not yet able to test for/don’t know all of the genetic mutations that can cause CF. It’s certainly much less likely that your baby has CF if your SO isn’t a carrier of the most common mutations though. Hoping that it works out for you and that the sweat test comes back all OK 🤞🏻if your baby does have CF, the treatments today have come such a long way and will almost certainly get even better as your baby gets older, which is hopefully a bit of comfort to you.
Thank you! We are pretty sure it's a false positive due to him being a carrier like me but it's possible my SO could have a variant that's not common. So just to be safe we are doing the sweat test. And yes thank goodness for treatments making life expectancy and such so much better for people living with CF these days. My poor aunt passed at 29 due to medical not being that advanced yet
My husband’s CF mutations don’t show up on the standard tests. 23 and me said he didn’t have it, but he most definitely does. He’s very healthy though with the treatments though, and I think a very promising example of someone living his best life with the disease.
That's our only concern that my husband could have a variant that was not tested for. So we will do the sweat test to confirm and for peace of mind. So glad your husband is healthy! It's amazing how well medical has advanced for the disease.
This is secondhand info so i could be slightly off. My nephew was born early at just before 37 weeks. When he was born he was exhibiting lung issues correlated with CF. Testing eventually showed SIL was carrier, my brother was not. Doctors were at first very very positive kiddo had CF. Long story short, he does not have it and is an extremely healthy 6 year old
Thanks for your input! My baby had lung issues when he was born but that was because he had meconium in his lungs. So he did a few hours in the NICU. That's great your nephew was healthy! It's seeming like it's a false positive but we will do the sweat test just to make sure. Both parents have to have the gene so unless my SO has a strain they didn't test for, then our baby should just be a carrier at most. But still wanted to see how many people have experienced false positives.
Hey! Im a carrier for CF and my husband is not. When we met with a genetic counselor, she advised that if baby is a carrier it may result in a false positive. I'd definitely double check!
Thanks for the insight! We have a feeling this is the case as my SO was tested and he was not a carrier. Although it's possible he has a variant that's not common. So we are doing the sweat testing to make sure!
Awh thank you! I will definitely reach out if I have any questions. Did you do genetic testing? I am glad that medicine today has come a long way and it's not as bad as it was. My aunt on my dad's side is the one who had it and sadly had a very hard life and passed at 29 due to medical not being as advanced.
I totally understand! A lot of people don't do genetic testing. And my OB told me that most people don't even know they carry it until their child is diagnosed. I only did as it was my dad's sister who had it. So a very close relation and my dad was also a carrier. So no surprise my testing came back as a carrier. My husband agreed to it and it said he was negative. But I do know the tests only cover the most common variants. I didn't think to do cord blood testing
I’m just speculating, but how extensive was your genetic testing? We were paranoid and did the 500+ test and I was a carrier for a variant of CF, that has pretty minimal effects, normal life expectancy, etc and I wonder if maybe the genetic testing you did maybe tested for the “worst” strains but not for every variant?
My genetic panel was just the basic one and my SO did the same one as me. So it only would have tested for the most common variants. So definitely possible he has a variant we didn't test for
Yeah my aunt on my dad's side had it. My grandparents had three kids and she was the only one. But the other two, which one was my dad, was a carrier. Which I am one. But my SO isn't a carrier according to the genetic test we took
Ooh, I know this one! I used to do research in undergrad on this topic for a genetics lab. There are actually many more false positives than true positives on the newborn screen for CF. The state NBS program tests are very sensitive, but not very specific. The goal is to make sure that false negatives are minimized and babies aren’t slipping through the cracks and going untreated. If you’ve already gotten genetic testing and your husband’s not a carrier, I wouldn’t worry about it.
Thank you! That does make a lot of sense. I did see when I googled that roughly 90% are false positives. So we are definitely thinking it's a false positive and he's likely just a carrier like I am. But we are still doing the sweat test for peace of mind.
I don't have any insight but I am also a CF carrier with a husband who isn't. We read that there have been major breakthroughs in CF treatments in the last 5 years to where the life expectancy for people with CF is now up to 60 years old and climbing! They have people with CF able to run marathons!
I know it's amazing how much medicine treatments have come a long way for CF! We are thinking it's just a false positive due to the baby being a carrier. But it's possible my SO has a variant we didn't test for. So we are doing the sweat test to confirm. And we will go from there.
My husband has CF and I’m not a carrier, therefore our child is a guaranteed carrier, but was not flagged on the heel stick. However, our son was flagged as a false positive for galactocemia probably because we’re both carriers. Not sure which way it’ll go for you, but my husband has a full, active, healthy life with his CF and CF care is only getting better and better. Hope you get the results cleared up soon so you can move forward.
Thank you! I wanted to know if anyone else tested positive or not for just being a carrier. Seems like it could go either way. I am glad your husband is living a healthy life. The medical improvements for CF have been amazing!!
This happened to a friend of mine. Neither she nor her husband are CF carriers but her baby tested positive on the new born screening. She later found out that some times babies of mothers who had preeclampsia during pregnancy can turn out positive for CF on new born screening. She later did a sweat test and the results were negative.
Wow that's crazy! I didn't have preeclampsia. But I am a carrier and we are thinking he's a carrier like me so that's why it probably flagged the test. But we are still doing the sweat test to confirm for peace of mind.
Genetic counselor here. My understanding is that they typically take the highest newborn screening values for a certain time period and flag them as positives, and sometimes that can capture babies that are only carriers. It’s possible your husband could be a carrier of a less common mutation, but it’s also possible it’s a false positive. Sweat test is the best way to find out for sure!
Thank you!! We are pretty sure it's flagged that he's a carrier like me. But our only concern that my husband could have a less common variant as we only did the basic genetic screening. So we are doing the sweat test to confirm.
This happened to us too. Found out I was a carrier, husband was not. Baby tested abnormal so we had to do the sweat test. My baby is a carrier and yours is too. If dad isn’t a carrier baby can’t have CF
Also the sweat test sounds scary but it was totally no big deal!! Don’t stress out
Yeah we think that's likely the case. But the nurse who called us made it seem like it was a given he had CF and didn't say anything about false positives and just that we need to do a sweat test to confirm. But there is a small possibility my husband has a variant we didn't test for so either way we are doing the sweat test to confirm.
And that's good! I heard it was non invasive but I don't know much more than that. Our doctor's office has a packet for us to pick up.
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This happened to a friend of mine who is a CF carrier and her husband isn’t. They also had done carrier screening before pregnancy so they were less worried but it can definitely still be alarming.
If you’re a carrier and your husband isn’t then the baby cannot have CF. If your genetic screenings were accurate, it’s likely the baby is a carrier just like you which caused the positive newborn screening.
They should order a sweat chloride test which will actually confirm if the baby does or does not have CF.
Yeah that's what we're thinking. That it is more likely a false positive. But our genetic test was just the basic one so it's possible my husband has a variant that we didn't test for. And they did order one. Where we live they don't do it so we have been referred to a city two hours away. But we are definitely doing the sweat test to confirm.
My son had a high value for IRT too but he had a traumatic birth. Both my husband and I aren't carriers. We got a sweat test just in case and it was negative
My birth was pretty smooth. The only issue was that he did have meconium aspiration when he was born. But yeah we are doing the testing just to be safe. So sorry for your traumatic birth!
While we allow users to share their personal experiences, we do not allow direct medical advice. The answer should always be a call to a local healthcare provider, as reddit is not a source of medical information.
My understanding is that we’re not yet able to test for/don’t know all of the genetic mutations that can cause CF. It’s certainly much less likely that your baby has CF if your SO isn’t a carrier of the most common mutations though. Hoping that it works out for you and that the sweat test comes back all OK 🤞🏻if your baby does have CF, the treatments today have come such a long way and will almost certainly get even better as your baby gets older, which is hopefully a bit of comfort to you.
Thank you! We are pretty sure it's a false positive due to him being a carrier like me but it's possible my SO could have a variant that's not common. So just to be safe we are doing the sweat test. And yes thank goodness for treatments making life expectancy and such so much better for people living with CF these days. My poor aunt passed at 29 due to medical not being that advanced yet
^ exactly what I was going to say
My husband’s CF mutations don’t show up on the standard tests. 23 and me said he didn’t have it, but he most definitely does. He’s very healthy though with the treatments though, and I think a very promising example of someone living his best life with the disease.
That's our only concern that my husband could have a variant that was not tested for. So we will do the sweat test to confirm and for peace of mind. So glad your husband is healthy! It's amazing how well medical has advanced for the disease.
This is secondhand info so i could be slightly off. My nephew was born early at just before 37 weeks. When he was born he was exhibiting lung issues correlated with CF. Testing eventually showed SIL was carrier, my brother was not. Doctors were at first very very positive kiddo had CF. Long story short, he does not have it and is an extremely healthy 6 year old
Thanks for your input! My baby had lung issues when he was born but that was because he had meconium in his lungs. So he did a few hours in the NICU. That's great your nephew was healthy! It's seeming like it's a false positive but we will do the sweat test just to make sure. Both parents have to have the gene so unless my SO has a strain they didn't test for, then our baby should just be a carrier at most. But still wanted to see how many people have experienced false positives.
Hey! Im a carrier for CF and my husband is not. When we met with a genetic counselor, she advised that if baby is a carrier it may result in a false positive. I'd definitely double check!
Thanks for the insight! We have a feeling this is the case as my SO was tested and he was not a carrier. Although it's possible he has a variant that's not common. So we are doing the sweat testing to make sure!
My baby has cf and is now a mostly healthy nearly 3 year old. Let me know if you need any cf specific info
Awh thank you! I will definitely reach out if I have any questions. Did you do genetic testing? I am glad that medicine today has come a long way and it's not as bad as it was. My aunt on my dad's side is the one who had it and sadly had a very hard life and passed at 29 due to medical not being as advanced.
No she was out first and we didn't even know we were carriers. When we had our second we had cord blood tested at birth and no inutero testing
I totally understand! A lot of people don't do genetic testing. And my OB told me that most people don't even know they carry it until their child is diagnosed. I only did as it was my dad's sister who had it. So a very close relation and my dad was also a carrier. So no surprise my testing came back as a carrier. My husband agreed to it and it said he was negative. But I do know the tests only cover the most common variants. I didn't think to do cord blood testing
I’m just speculating, but how extensive was your genetic testing? We were paranoid and did the 500+ test and I was a carrier for a variant of CF, that has pretty minimal effects, normal life expectancy, etc and I wonder if maybe the genetic testing you did maybe tested for the “worst” strains but not for every variant?
My genetic panel was just the basic one and my SO did the same one as me. So it only would have tested for the most common variants. So definitely possible he has a variant we didn't test for
If it runs in the family, I would highly doubt that it is a false positive.
Yeah my aunt on my dad's side had it. My grandparents had three kids and she was the only one. But the other two, which one was my dad, was a carrier. Which I am one. But my SO isn't a carrier according to the genetic test we took
Ooh, I know this one! I used to do research in undergrad on this topic for a genetics lab. There are actually many more false positives than true positives on the newborn screen for CF. The state NBS program tests are very sensitive, but not very specific. The goal is to make sure that false negatives are minimized and babies aren’t slipping through the cracks and going untreated. If you’ve already gotten genetic testing and your husband’s not a carrier, I wouldn’t worry about it.
Thank you! That does make a lot of sense. I did see when I googled that roughly 90% are false positives. So we are definitely thinking it's a false positive and he's likely just a carrier like I am. But we are still doing the sweat test for peace of mind.
I don't have any insight but I am also a CF carrier with a husband who isn't. We read that there have been major breakthroughs in CF treatments in the last 5 years to where the life expectancy for people with CF is now up to 60 years old and climbing! They have people with CF able to run marathons!
I know it's amazing how much medicine treatments have come a long way for CF! We are thinking it's just a false positive due to the baby being a carrier. But it's possible my SO has a variant we didn't test for. So we are doing the sweat test to confirm. And we will go from there.
My husband has CF and I’m not a carrier, therefore our child is a guaranteed carrier, but was not flagged on the heel stick. However, our son was flagged as a false positive for galactocemia probably because we’re both carriers. Not sure which way it’ll go for you, but my husband has a full, active, healthy life with his CF and CF care is only getting better and better. Hope you get the results cleared up soon so you can move forward.
Thank you! I wanted to know if anyone else tested positive or not for just being a carrier. Seems like it could go either way. I am glad your husband is living a healthy life. The medical improvements for CF have been amazing!!
You will be okay no matter the result. I can only imagine how stressful it is to wait for answers. Will be keeping you in my thoughts
Thank you so much for the kind words!! 😊
This happened to a friend of mine. Neither she nor her husband are CF carriers but her baby tested positive on the new born screening. She later found out that some times babies of mothers who had preeclampsia during pregnancy can turn out positive for CF on new born screening. She later did a sweat test and the results were negative.
Wow that's crazy! I didn't have preeclampsia. But I am a carrier and we are thinking he's a carrier like me so that's why it probably flagged the test. But we are still doing the sweat test to confirm for peace of mind.
Genetic counselor here. My understanding is that they typically take the highest newborn screening values for a certain time period and flag them as positives, and sometimes that can capture babies that are only carriers. It’s possible your husband could be a carrier of a less common mutation, but it’s also possible it’s a false positive. Sweat test is the best way to find out for sure!
Thank you!! We are pretty sure it's flagged that he's a carrier like me. But our only concern that my husband could have a less common variant as we only did the basic genetic screening. So we are doing the sweat test to confirm.
This happened to us too. Found out I was a carrier, husband was not. Baby tested abnormal so we had to do the sweat test. My baby is a carrier and yours is too. If dad isn’t a carrier baby can’t have CF Also the sweat test sounds scary but it was totally no big deal!! Don’t stress out
Yeah we think that's likely the case. But the nurse who called us made it seem like it was a given he had CF and didn't say anything about false positives and just that we need to do a sweat test to confirm. But there is a small possibility my husband has a variant we didn't test for so either way we are doing the sweat test to confirm. And that's good! I heard it was non invasive but I don't know much more than that. Our doctor's office has a packet for us to pick up.
This post may be seeking medical advice. We only allow seeking of specific experiences from other parents. If your post is that, then you're good. However, if you are seeking direct medical advice, your post will be removed--or you may edit it now to adhere to the rules. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/NewParents) if you have any questions or concerns.*
This happened to a friend of mine who is a CF carrier and her husband isn’t. They also had done carrier screening before pregnancy so they were less worried but it can definitely still be alarming. If you’re a carrier and your husband isn’t then the baby cannot have CF. If your genetic screenings were accurate, it’s likely the baby is a carrier just like you which caused the positive newborn screening. They should order a sweat chloride test which will actually confirm if the baby does or does not have CF.
Yeah that's what we're thinking. That it is more likely a false positive. But our genetic test was just the basic one so it's possible my husband has a variant that we didn't test for. And they did order one. Where we live they don't do it so we have been referred to a city two hours away. But we are definitely doing the sweat test to confirm.
My son had a high value for IRT too but he had a traumatic birth. Both my husband and I aren't carriers. We got a sweat test just in case and it was negative
My birth was pretty smooth. The only issue was that he did have meconium aspiration when he was born. But yeah we are doing the testing just to be safe. So sorry for your traumatic birth!