CF Carrier ( me and my boyfriend )

M

MaryandJohn

New member
I am 12 weeks pregnant ( 1st time mommy <img src="i/expressions/face-icon-small-smile.gif" border="0"> and found out that i am a carrier of CF, after finding out my boyfriend went for blood work and found out he has a mutation as well ( as they put it)

from what I could understand and what i was told, I have a different mutation than him, so I have one strand of CF and He has another, our numbers do not match up..

my nurse mentioned she had never seen our numbers mixed before so she couldnt answer any questions and she said most likly they will cancel eachother out ( which i was told he most likly would be negative) I am very scared and worried and I am set up with genetic consuling on mon. but this is going to be a very long weekend

so my question is do two different numbers/strands cause CF or did we have more of a chance if our numbers/strands of CF were the same??

( im sorry if Im not wording everything correctly)
 
M

MaryandJohn

New member
I am 12 weeks pregnant ( 1st time mommy <img src="i/expressions/face-icon-small-smile.gif" border="0"> and found out that i am a carrier of CF, after finding out my boyfriend went for blood work and found out he has a mutation as well ( as they put it)

from what I could understand and what i was told, I have a different mutation than him, so I have one strand of CF and He has another, our numbers do not match up..

my nurse mentioned she had never seen our numbers mixed before so she couldnt answer any questions and she said most likly they will cancel eachother out ( which i was told he most likly would be negative) I am very scared and worried and I am set up with genetic consuling on mon. but this is going to be a very long weekend

so my question is do two different numbers/strands cause CF or did we have more of a chance if our numbers/strands of CF were the same??

( im sorry if Im not wording everything correctly)
 
M

MaryandJohn

New member
I am 12 weeks pregnant ( 1st time mommy <img src="i/expressions/face-icon-small-smile.gif" border="0"> and found out that i am a carrier of CF, after finding out my boyfriend went for blood work and found out he has a mutation as well ( as they put it)
<br />
<br />from what I could understand and what i was told, I have a different mutation than him, so I have one strand of CF and He has another, our numbers do not match up..
<br />
<br />my nurse mentioned she had never seen our numbers mixed before so she couldnt answer any questions and she said most likly they will cancel eachother out ( which i was told he most likly would be negative) I am very scared and worried and I am set up with genetic consuling on mon. but this is going to be a very long weekend
<br />
<br />so my question is do two different numbers/strands cause CF or did we have more of a chance if our numbers/strands of CF were the same??
<br />
<br />( im sorry if Im not wording everything correctly)
 
R

Ratatosk

Administrator
Staff member
You both are CF carriers and therefore have a 25 percent or 1 in 4 chance of having a child with CF.

If you do a search on this site of those mutations, specficially R117H you may find people with both those mutations who have cf.
 
R

Ratatosk

Administrator
Staff member
You both are CF carriers and therefore have a 25 percent or 1 in 4 chance of having a child with CF.

If you do a search on this site of those mutations, specficially R117H you may find people with both those mutations who have cf.
 
R

Ratatosk

Administrator
Staff member
You both are CF carriers and therefore have a 25 percent or 1 in 4 chance of having a child with CF.
<br />
<br />If you do a search on this site of those mutations, specficially R117H you may find people with both those mutations who have cf.
 
S

SARAHSARAH253

New member
Hi there,

I just wanted to say hi and welcome to this site. The people on here are GREAT. I have used this site as a tool. I really hope your little baby doesn't have CF. Let me tell you that I think you should talk to some experts in CF. Your nurse really doesn't sound like she knows what she is talking about. The same thing happened to me with my first pregnancy as far as my OBYGN had no REAL education on Cystic Fibrosis.

Here is my story

Three years ago I got pregnant for the first time...SUPER SUPER EXCITED. Went into blood work and found out I was a carrier. Then my husband went in and a week later we found out he was not a carrier. Okay fast forward to the birth of my son all hell broke loose. Every doctor nurse/surgeon asked me are you sure your husband is the father. The suspected CF. Didn't add up if my husband wasn't a carrier. Genetically impossible for CF with out two carriers they said. Month later we were finally introduced to the CF Team. There they explained everything about CF. Including that they only test for 70 mutations during the screen and there are over 1,200 mutations. So my husbands was super rare, and he slipped through the screen. My entire world turned upside down. I was so angry because my OBYGN had told me all the WRONG INFORMATION. That's why I think it's really important you talk to some professionals that give you all the CORRECT facts.

You and your boyfriend have two different mutations. That's why they caught it, but their facts are really wrong. There no such thing as cancelling each other out. I wish it was that simple. Now that you know your mutations at least you know the facts. Two carriers have a 1 and 4 chance of having a baby with CF. Then you have some personal decisions to make on how you handle that. For me I had no choice with my son. I was pregnant and my husband and I both agreed that we love our baby no mater what, and never did an AMINO. Then he was born and we had to live what we spoke. We told ourselves we be happy with whatever God gave us. And we got our beautiful Johnny, and our little boy has CF. We love him so much!! Two years later I wanted another baby soooo bad and we were crazy and decided to try for one more child. We again refused all the testing and we got our daughter Bailey. Bailey had blood work done at birth two weeks later we got the results that she didn't have CF. Again these were my choices. I'm just sharing my story.

I hope I didn't upset you by sharing. If you feel like talking or anything I would be happy to speak with. I know it's scary, and sooooo damn isolating. None of my friends new what I was going through. It's tough enough to deal with pregnancy hormones alone then you get thrown a curve ball like CF and it's TOOOO much to deal with alone. Hang in there!! Talk to some medical professionals in the CF field. They can give you all the RIGHT info that's a really good start.

Sarah

Mommy to Johnny 3 1/2 w/cf....Bailey 16 months old no CF
 
S

SARAHSARAH253

New member
Hi there,

I just wanted to say hi and welcome to this site. The people on here are GREAT. I have used this site as a tool. I really hope your little baby doesn't have CF. Let me tell you that I think you should talk to some experts in CF. Your nurse really doesn't sound like she knows what she is talking about. The same thing happened to me with my first pregnancy as far as my OBYGN had no REAL education on Cystic Fibrosis.

Here is my story

Three years ago I got pregnant for the first time...SUPER SUPER EXCITED. Went into blood work and found out I was a carrier. Then my husband went in and a week later we found out he was not a carrier. Okay fast forward to the birth of my son all hell broke loose. Every doctor nurse/surgeon asked me are you sure your husband is the father. The suspected CF. Didn't add up if my husband wasn't a carrier. Genetically impossible for CF with out two carriers they said. Month later we were finally introduced to the CF Team. There they explained everything about CF. Including that they only test for 70 mutations during the screen and there are over 1,200 mutations. So my husbands was super rare, and he slipped through the screen. My entire world turned upside down. I was so angry because my OBYGN had told me all the WRONG INFORMATION. That's why I think it's really important you talk to some professionals that give you all the CORRECT facts.

You and your boyfriend have two different mutations. That's why they caught it, but their facts are really wrong. There no such thing as cancelling each other out. I wish it was that simple. Now that you know your mutations at least you know the facts. Two carriers have a 1 and 4 chance of having a baby with CF. Then you have some personal decisions to make on how you handle that. For me I had no choice with my son. I was pregnant and my husband and I both agreed that we love our baby no mater what, and never did an AMINO. Then he was born and we had to live what we spoke. We told ourselves we be happy with whatever God gave us. And we got our beautiful Johnny, and our little boy has CF. We love him so much!! Two years later I wanted another baby soooo bad and we were crazy and decided to try for one more child. We again refused all the testing and we got our daughter Bailey. Bailey had blood work done at birth two weeks later we got the results that she didn't have CF. Again these were my choices. I'm just sharing my story.

I hope I didn't upset you by sharing. If you feel like talking or anything I would be happy to speak with. I know it's scary, and sooooo damn isolating. None of my friends new what I was going through. It's tough enough to deal with pregnancy hormones alone then you get thrown a curve ball like CF and it's TOOOO much to deal with alone. Hang in there!! Talk to some medical professionals in the CF field. They can give you all the RIGHT info that's a really good start.

Sarah

Mommy to Johnny 3 1/2 w/cf....Bailey 16 months old no CF
 
S

SARAHSARAH253

New member
Hi there,
<br />
<br />I just wanted to say hi and welcome to this site. The people on here are GREAT. I have used this site as a tool. I really hope your little baby doesn't have CF. Let me tell you that I think you should talk to some experts in CF. Your nurse really doesn't sound like she knows what she is talking about. The same thing happened to me with my first pregnancy as far as my OBYGN had no REAL education on Cystic Fibrosis.
<br />
<br />Here is my story
<br />
<br />Three years ago I got pregnant for the first time...SUPER SUPER EXCITED. Went into blood work and found out I was a carrier. Then my husband went in and a week later we found out he was not a carrier. Okay fast forward to the birth of my son all hell broke loose. Every doctor nurse/surgeon asked me are you sure your husband is the father. The suspected CF. Didn't add up if my husband wasn't a carrier. Genetically impossible for CF with out two carriers they said. Month later we were finally introduced to the CF Team. There they explained everything about CF. Including that they only test for 70 mutations during the screen and there are over 1,200 mutations. So my husbands was super rare, and he slipped through the screen. My entire world turned upside down. I was so angry because my OBYGN had told me all the WRONG INFORMATION. That's why I think it's really important you talk to some professionals that give you all the CORRECT facts.
<br />
<br />You and your boyfriend have two different mutations. That's why they caught it, but their facts are really wrong. There no such thing as cancelling each other out. I wish it was that simple. Now that you know your mutations at least you know the facts. Two carriers have a 1 and 4 chance of having a baby with CF. Then you have some personal decisions to make on how you handle that. For me I had no choice with my son. I was pregnant and my husband and I both agreed that we love our baby no mater what, and never did an AMINO. Then he was born and we had to live what we spoke. We told ourselves we be happy with whatever God gave us. And we got our beautiful Johnny, and our little boy has CF. We love him so much!! Two years later I wanted another baby soooo bad and we were crazy and decided to try for one more child. We again refused all the testing and we got our daughter Bailey. Bailey had blood work done at birth two weeks later we got the results that she didn't have CF. Again these were my choices. I'm just sharing my story.
<br />
<br />I hope I didn't upset you by sharing. If you feel like talking or anything I would be happy to speak with. I know it's scary, and sooooo damn isolating. None of my friends new what I was going through. It's tough enough to deal with pregnancy hormones alone then you get thrown a curve ball like CF and it's TOOOO much to deal with alone. Hang in there!! Talk to some medical professionals in the CF field. They can give you all the RIGHT info that's a really good start.
<br />
<br />Sarah
<br />
<br />Mommy to Johnny 3 1/2 w/cf....Bailey 16 months old no CF
 
P

Printer

Active member
Hello:

I'm male age 71 and I have CF. First understand that you can only be sure of getting correct information at a CF Center. You can search this site for a center near you.

I too have Delta F 508 and one unidentified gene. I have been married for 48 years. I have a BS in Business and did my grad work in an MBA program.

There are alot of CF patients in their 60s and 70s. CF does not have to be a death sentence. You are only looking at a 1 in 4 possibility of your child having CF.

Lastly, there will be a cure in your childs lifetime.

Best of wishes to you,
Bill
 
P

Printer

Active member
Hello:

I'm male age 71 and I have CF. First understand that you can only be sure of getting correct information at a CF Center. You can search this site for a center near you.

I too have Delta F 508 and one unidentified gene. I have been married for 48 years. I have a BS in Business and did my grad work in an MBA program.

There are alot of CF patients in their 60s and 70s. CF does not have to be a death sentence. You are only looking at a 1 in 4 possibility of your child having CF.

Lastly, there will be a cure in your childs lifetime.

Best of wishes to you,
Bill
 
P

Printer

Active member
Hello:
<br />
<br />I'm male age 71 and I have CF. First understand that you can only be sure of getting correct information at a CF Center. You can search this site for a center near you.
<br />
<br />I too have Delta F 508 and one unidentified gene. I have been married for 48 years. I have a BS in Business and did my grad work in an MBA program.
<br />
<br />There are alot of CF patients in their 60s and 70s. CF does not have to be a death sentence. You are only looking at a 1 in 4 possibility of your child having CF.
<br />
<br />Lastly, there will be a cure in your childs lifetime.
<br />
<br />Best of wishes to you,
<br />Bill
 
K

kellyga

New member
Lots of good information already posted. Two things I wanted to add. If you are in the US you can go to www.cff.org to search for your local accredited care center. They will be able to provide you with the best information.

Second, since there is a 25% chance that the baby will have CF, you may want to ask for frequent higher resolution ultrasounds when you are farther along. My daughter was born with a bowel obstruction that about 20% of CF babies have. It is important to watch for it ahead of time and be prepared just in case.

Good luck to you, hoping your little one falls in the other 75%
 
K

kellyga

New member
Lots of good information already posted. Two things I wanted to add. If you are in the US you can go to www.cff.org to search for your local accredited care center. They will be able to provide you with the best information.

Second, since there is a 25% chance that the baby will have CF, you may want to ask for frequent higher resolution ultrasounds when you are farther along. My daughter was born with a bowel obstruction that about 20% of CF babies have. It is important to watch for it ahead of time and be prepared just in case.

Good luck to you, hoping your little one falls in the other 75%
 
K

kellyga

New member
Lots of good information already posted. Two things I wanted to add. If you are in the US you can go to www.cff.org to search for your local accredited care center. They will be able to provide you with the best information.
<br />
<br />Second, since there is a 25% chance that the baby will have CF, you may want to ask for frequent higher resolution ultrasounds when you are farther along. My daughter was born with a bowel obstruction that about 20% of CF babies have. It is important to watch for it ahead of time and be prepared just in case.
<br />
<br />Good luck to you, hoping your little one falls in the other 75%
 
M

MaryandJohn

New member
Thank you all so much, and I do appericaite the truth
and Sarah thank you for your story and Bill thank you to., you all are in my prayers.. We do have an appt Monday with Genetic Counsuling and they have all my records so thats when I will found out all they have to tell us.

I would be lying if I said I didnt get upset, wish the docs office would be more straight with things.

Thank you all again I will keep you updated and be back monday night..

Mary, John and the little one .
 
M

MaryandJohn

New member
Thank you all so much, and I do appericaite the truth
and Sarah thank you for your story and Bill thank you to., you all are in my prayers.. We do have an appt Monday with Genetic Counsuling and they have all my records so thats when I will found out all they have to tell us.

I would be lying if I said I didnt get upset, wish the docs office would be more straight with things.

Thank you all again I will keep you updated and be back monday night..

Mary, John and the little one .
 
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