Pregnant-child diagnosed

welshwitch · Nov 5, 2007

I am a 28 year old woman w/ CF. Although MAYBE my parents were a "little" more overprotective than most, I turned out much tougher and feistier than my younger (no CF) brother! From a CF kid's perspective:

Let your kid just have a normal life. Let your kid experience the same pain, fear, and challenges that life will undoubtedly throw at them. I like to think of CF as a little "bonus" challenge that I get to handle! So far I've done a great job at dealing with it. Just be sure not to shelter them and prevent them from living a full and happy life.

Also, regarding the guilt issue: I don't think it ever crossed my mind to blame my parents for this disease, even though they passed it to me, it certainly is no one's fault, and you must not harbor any guilt for this situation.

Oh yeah, as a side note, I work full time, graduated from both college and graduate school, have never been in the hospital and am looking to a bright future. CF definitely toughens people, but it definitely doesn't mean that their lives are not going to be full and happy. It's made me wiser and smarter.

welshwitch · Nov 5, 2007

I am a 28 year old woman w/ CF. Although MAYBE my parents were a "little" more overprotective than most, I turned out much tougher and feistier than my younger (no CF) brother! From a CF kid's perspective:

Let your kid just have a normal life. Let your kid experience the same pain, fear, and challenges that life will undoubtedly throw at them. I like to think of CF as a little "bonus" challenge that I get to handle! So far I've done a great job at dealing with it. Just be sure not to shelter them and prevent them from living a full and happy life.

Also, regarding the guilt issue: I don't think it ever crossed my mind to blame my parents for this disease, even though they passed it to me, it certainly is no one's fault, and you must not harbor any guilt for this situation.

Oh yeah, as a side note, I work full time, graduated from both college and graduate school, have never been in the hospital and am looking to a bright future. CF definitely toughens people, but it definitely doesn't mean that their lives are not going to be full and happy. It's made me wiser and smarter.

welshwitch · Nov 5, 2007

I am a 28 year old woman w/ CF. Although MAYBE my parents were a "little" more overprotective than most, I turned out much tougher and feistier than my younger (no CF) brother! From a CF kid's perspective:

Let your kid just have a normal life. Let your kid experience the same pain, fear, and challenges that life will undoubtedly throw at them. I like to think of CF as a little "bonus" challenge that I get to handle! So far I've done a great job at dealing with it. Just be sure not to shelter them and prevent them from living a full and happy life.

Also, regarding the guilt issue: I don't think it ever crossed my mind to blame my parents for this disease, even though they passed it to me, it certainly is no one's fault, and you must not harbor any guilt for this situation.

Oh yeah, as a side note, I work full time, graduated from both college and graduate school, have never been in the hospital and am looking to a bright future. CF definitely toughens people, but it definitely doesn't mean that their lives are not going to be full and happy. It's made me wiser and smarter.

welshwitch · Nov 5, 2007

I am a 28 year old woman w/ CF. Although MAYBE my parents were a "little" more overprotective than most, I turned out much tougher and feistier than my younger (no CF) brother! From a CF kid's perspective:

Let your kid just have a normal life. Let your kid experience the same pain, fear, and challenges that life will undoubtedly throw at them. I like to think of CF as a little "bonus" challenge that I get to handle! So far I've done a great job at dealing with it. Just be sure not to shelter them and prevent them from living a full and happy life.

Also, regarding the guilt issue: I don't think it ever crossed my mind to blame my parents for this disease, even though they passed it to me, it certainly is no one's fault, and you must not harbor any guilt for this situation.

Oh yeah, as a side note, I work full time, graduated from both college and graduate school, have never been in the hospital and am looking to a bright future. CF definitely toughens people, but it definitely doesn't mean that their lives are not going to be full and happy. It's made me wiser and smarter.

welshwitch · Nov 5, 2007

I am a 28 year old woman w/ CF. Although MAYBE my parents were a "little" more overprotective than most, I turned out much tougher and feistier than my younger (no CF) brother! From a CF kid's perspective:

Let your kid just have a normal life. Let your kid experience the same pain, fear, and challenges that life will undoubtedly throw at them. I like to think of CF as a little "bonus" challenge that I get to handle! So far I've done a great job at dealing with it. Just be sure not to shelter them and prevent them from living a full and happy life.

Also, regarding the guilt issue: I don't think it ever crossed my mind to blame my parents for this disease, even though they passed it to me, it certainly is no one's fault, and you must not harbor any guilt for this situation.

Oh yeah, as a side note, I work full time, graduated from both college and graduate school, have never been in the hospital and am looking to a bright future. CF definitely toughens people, but it definitely doesn't mean that their lives are not going to be full and happy. It's made me wiser and smarter.

denise25 · Nov 5, 2007

I hope you don't mind if I jump in here and ask a question. Me and my husband found out we are both carriers for CF. I have a mild mutation (not sure of the actual mutation) I believe is what they said however my husband has a rare mutation that there isn't much info on. I have seen a genetic counselor and spoke regarding the options. I am 8 weeks pregnant and patiently waiting to get a CVS test to determine if the baby has CF or is just a carrier. I actually have 2 questions.. First to the woman who found out during pregnancy that they and their husbands were carriers. Did you experience anything abnormal while pregnant or with the babies growth? Also, my husband and I did IUI with sperm wash and wondered if washing the sperm can decrease our chances of the baby having CF by taking only my husbands healthy sperm and eliminating and bad forming or not as good sperm. I actually asked that to the genetic counselor and she said they have not really studied it but it is a possibility and a very good question. I am so nervous about the future of this pregnancy. It took me years just to get pregnant now I am faced with this. Any help would be greatly appreciated.

denise25 · Nov 5, 2007

I hope you don't mind if I jump in here and ask a question. Me and my husband found out we are both carriers for CF. I have a mild mutation (not sure of the actual mutation) I believe is what they said however my husband has a rare mutation that there isn't much info on. I have seen a genetic counselor and spoke regarding the options. I am 8 weeks pregnant and patiently waiting to get a CVS test to determine if the baby has CF or is just a carrier. I actually have 2 questions.. First to the woman who found out during pregnancy that they and their husbands were carriers. Did you experience anything abnormal while pregnant or with the babies growth? Also, my husband and I did IUI with sperm wash and wondered if washing the sperm can decrease our chances of the baby having CF by taking only my husbands healthy sperm and eliminating and bad forming or not as good sperm. I actually asked that to the genetic counselor and she said they have not really studied it but it is a possibility and a very good question. I am so nervous about the future of this pregnancy. It took me years just to get pregnant now I am faced with this. Any help would be greatly appreciated.

denise25 · Nov 5, 2007

I hope you don't mind if I jump in here and ask a question. Me and my husband found out we are both carriers for CF. I have a mild mutation (not sure of the actual mutation) I believe is what they said however my husband has a rare mutation that there isn't much info on. I have seen a genetic counselor and spoke regarding the options. I am 8 weeks pregnant and patiently waiting to get a CVS test to determine if the baby has CF or is just a carrier. I actually have 2 questions.. First to the woman who found out during pregnancy that they and their husbands were carriers. Did you experience anything abnormal while pregnant or with the babies growth? Also, my husband and I did IUI with sperm wash and wondered if washing the sperm can decrease our chances of the baby having CF by taking only my husbands healthy sperm and eliminating and bad forming or not as good sperm. I actually asked that to the genetic counselor and she said they have not really studied it but it is a possibility and a very good question. I am so nervous about the future of this pregnancy. It took me years just to get pregnant now I am faced with this. Any help would be greatly appreciated.

denise25 · Nov 5, 2007

I hope you don't mind if I jump in here and ask a question. Me and my husband found out we are both carriers for CF. I have a mild mutation (not sure of the actual mutation) I believe is what they said however my husband has a rare mutation that there isn't much info on. I have seen a genetic counselor and spoke regarding the options. I am 8 weeks pregnant and patiently waiting to get a CVS test to determine if the baby has CF or is just a carrier. I actually have 2 questions.. First to the woman who found out during pregnancy that they and their husbands were carriers. Did you experience anything abnormal while pregnant or with the babies growth? Also, my husband and I did IUI with sperm wash and wondered if washing the sperm can decrease our chances of the baby having CF by taking only my husbands healthy sperm and eliminating and bad forming or not as good sperm. I actually asked that to the genetic counselor and she said they have not really studied it but it is a possibility and a very good question. I am so nervous about the future of this pregnancy. It took me years just to get pregnant now I am faced with this. Any help would be greatly appreciated.

denise25 · Nov 5, 2007

I hope you don't mind if I jump in here and ask a question. Me and my husband found out we are both carriers for CF. I have a mild mutation (not sure of the actual mutation) I believe is what they said however my husband has a rare mutation that there isn't much info on. I have seen a genetic counselor and spoke regarding the options. I am 8 weeks pregnant and patiently waiting to get a CVS test to determine if the baby has CF or is just a carrier. I actually have 2 questions.. First to the woman who found out during pregnancy that they and their husbands were carriers. Did you experience anything abnormal while pregnant or with the babies growth? Also, my husband and I did IUI with sperm wash and wondered if washing the sperm can decrease our chances of the baby having CF by taking only my husbands healthy sperm and eliminating and bad forming or not as good sperm. I actually asked that to the genetic counselor and she said they have not really studied it but it is a possibility and a very good question. I am so nervous about the future of this pregnancy. It took me years just to get pregnant now I am faced with this. Any help would be greatly appreciated.

newmom36 · Nov 5, 2007

Hi Denise,

Thanks for jumping in. I may not have the answers that others will for an entire pregnancy, but what I do know is it took us 2.5 years to get pregnant (at least one that didn't miscarriage) and we did IUI with sperm wash, but I don't think that they can tell "good sperm genes" from bad, they are mostly looking for good swimmers (good motility and mobility) and healthy appearance. Without the actual genetic testing of the sperm, I don't think that they can tell the difference with the genes with only sperm wash (correct me if I am wrong here, but this is my understanding from my RE).
My 20 weeks have been as normal as anyone elses that has undergone infertility because as that is our background we naturally have many more ultrasounds than most...I am on U/S number 5 at 20 weeks so you get plenty of opportunity to see your kiddo, which is fun if you exclude why you have to get them. My child at 20 weeks appeared normal and healthy although they could see the spots in the lungs that is typically present with CF. Besides that, I haven't done anything different than any others, but from what I read, we are in for many, many more U/S to keep an eye on the bowels and lungs right before birth. My genetic counselor said there was nothing really that we could change about our habits in-utero.
I am so sympathetic to your situation because I have (and am still having) the "how much am I expected to deal with -- poor me" scenario. Seriously! After years of infertility, drugs, procedures, now this! But what I discovered already in a few short days is that my infertility battle has already helped with the knowing I need a support system, knowing to ask questions, realizing there will be plently of stupid comments from others, people who always think they know the right thing and are judgemental, all the same stuff that surrounds infertility, so we are tougher because of that battle and maybe we can survive this one as well!
Hang in there Denise and I will cross my fingers for a negative outcome to your CVS results (not often we ask for something to be negative!)

newmom36 · Nov 5, 2007

Hi Denise,

Thanks for jumping in. I may not have the answers that others will for an entire pregnancy, but what I do know is it took us 2.5 years to get pregnant (at least one that didn't miscarriage) and we did IUI with sperm wash, but I don't think that they can tell "good sperm genes" from bad, they are mostly looking for good swimmers (good motility and mobility) and healthy appearance. Without the actual genetic testing of the sperm, I don't think that they can tell the difference with the genes with only sperm wash (correct me if I am wrong here, but this is my understanding from my RE).
My 20 weeks have been as normal as anyone elses that has undergone infertility because as that is our background we naturally have many more ultrasounds than most...I am on U/S number 5 at 20 weeks so you get plenty of opportunity to see your kiddo, which is fun if you exclude why you have to get them. My child at 20 weeks appeared normal and healthy although they could see the spots in the lungs that is typically present with CF. Besides that, I haven't done anything different than any others, but from what I read, we are in for many, many more U/S to keep an eye on the bowels and lungs right before birth. My genetic counselor said there was nothing really that we could change about our habits in-utero.
I am so sympathetic to your situation because I have (and am still having) the "how much am I expected to deal with -- poor me" scenario. Seriously! After years of infertility, drugs, procedures, now this! But what I discovered already in a few short days is that my infertility battle has already helped with the knowing I need a support system, knowing to ask questions, realizing there will be plently of stupid comments from others, people who always think they know the right thing and are judgemental, all the same stuff that surrounds infertility, so we are tougher because of that battle and maybe we can survive this one as well!
Hang in there Denise and I will cross my fingers for a negative outcome to your CVS results (not often we ask for something to be negative!)

newmom36 · Nov 5, 2007

Hi Denise,

Thanks for jumping in. I may not have the answers that others will for an entire pregnancy, but what I do know is it took us 2.5 years to get pregnant (at least one that didn't miscarriage) and we did IUI with sperm wash, but I don't think that they can tell "good sperm genes" from bad, they are mostly looking for good swimmers (good motility and mobility) and healthy appearance. Without the actual genetic testing of the sperm, I don't think that they can tell the difference with the genes with only sperm wash (correct me if I am wrong here, but this is my understanding from my RE).
My 20 weeks have been as normal as anyone elses that has undergone infertility because as that is our background we naturally have many more ultrasounds than most...I am on U/S number 5 at 20 weeks so you get plenty of opportunity to see your kiddo, which is fun if you exclude why you have to get them. My child at 20 weeks appeared normal and healthy although they could see the spots in the lungs that is typically present with CF. Besides that, I haven't done anything different than any others, but from what I read, we are in for many, many more U/S to keep an eye on the bowels and lungs right before birth. My genetic counselor said there was nothing really that we could change about our habits in-utero.
I am so sympathetic to your situation because I have (and am still having) the "how much am I expected to deal with -- poor me" scenario. Seriously! After years of infertility, drugs, procedures, now this! But what I discovered already in a few short days is that my infertility battle has already helped with the knowing I need a support system, knowing to ask questions, realizing there will be plently of stupid comments from others, people who always think they know the right thing and are judgemental, all the same stuff that surrounds infertility, so we are tougher because of that battle and maybe we can survive this one as well!
Hang in there Denise and I will cross my fingers for a negative outcome to your CVS results (not often we ask for something to be negative!)

newmom36 · Nov 5, 2007

Hi Denise,

Thanks for jumping in. I may not have the answers that others will for an entire pregnancy, but what I do know is it took us 2.5 years to get pregnant (at least one that didn't miscarriage) and we did IUI with sperm wash, but I don't think that they can tell "good sperm genes" from bad, they are mostly looking for good swimmers (good motility and mobility) and healthy appearance. Without the actual genetic testing of the sperm, I don't think that they can tell the difference with the genes with only sperm wash (correct me if I am wrong here, but this is my understanding from my RE).
My 20 weeks have been as normal as anyone elses that has undergone infertility because as that is our background we naturally have many more ultrasounds than most...I am on U/S number 5 at 20 weeks so you get plenty of opportunity to see your kiddo, which is fun if you exclude why you have to get them. My child at 20 weeks appeared normal and healthy although they could see the spots in the lungs that is typically present with CF. Besides that, I haven't done anything different than any others, but from what I read, we are in for many, many more U/S to keep an eye on the bowels and lungs right before birth. My genetic counselor said there was nothing really that we could change about our habits in-utero.
I am so sympathetic to your situation because I have (and am still having) the "how much am I expected to deal with -- poor me" scenario. Seriously! After years of infertility, drugs, procedures, now this! But what I discovered already in a few short days is that my infertility battle has already helped with the knowing I need a support system, knowing to ask questions, realizing there will be plently of stupid comments from others, people who always think they know the right thing and are judgemental, all the same stuff that surrounds infertility, so we are tougher because of that battle and maybe we can survive this one as well!
Hang in there Denise and I will cross my fingers for a negative outcome to your CVS results (not often we ask for something to be negative!)

newmom36 · Nov 5, 2007

Hi Denise,

Thanks for jumping in. I may not have the answers that others will for an entire pregnancy, but what I do know is it took us 2.5 years to get pregnant (at least one that didn't miscarriage) and we did IUI with sperm wash, but I don't think that they can tell "good sperm genes" from bad, they are mostly looking for good swimmers (good motility and mobility) and healthy appearance. Without the actual genetic testing of the sperm, I don't think that they can tell the difference with the genes with only sperm wash (correct me if I am wrong here, but this is my understanding from my RE).
My 20 weeks have been as normal as anyone elses that has undergone infertility because as that is our background we naturally have many more ultrasounds than most...I am on U/S number 5 at 20 weeks so you get plenty of opportunity to see your kiddo, which is fun if you exclude why you have to get them. My child at 20 weeks appeared normal and healthy although they could see the spots in the lungs that is typically present with CF. Besides that, I haven't done anything different than any others, but from what I read, we are in for many, many more U/S to keep an eye on the bowels and lungs right before birth. My genetic counselor said there was nothing really that we could change about our habits in-utero.
I am so sympathetic to your situation because I have (and am still having) the "how much am I expected to deal with -- poor me" scenario. Seriously! After years of infertility, drugs, procedures, now this! But what I discovered already in a few short days is that my infertility battle has already helped with the knowing I need a support system, knowing to ask questions, realizing there will be plently of stupid comments from others, people who always think they know the right thing and are judgemental, all the same stuff that surrounds infertility, so we are tougher because of that battle and maybe we can survive this one as well!
Hang in there Denise and I will cross my fingers for a negative outcome to your CVS results (not often we ask for something to be negative!)

amay30 · Nov 6, 2007

My situation is similar but slightly different that than I have read here. I was dx at 27 when doing genetic testing on my first child (My wife was also a carrier). Both my mother and aunt are also CFers (mom is much healthier overall at 53, aunt is 45 and trying to get t-plant). I feel most fortunate as my mutation involves the R117, and so I am nearly asymptomatic.

My wife and I (despite the risk) chose to try for a second child, and just this morning had amnio results back. Our little girl is homozygous for Delta F508. My guilt is truly overwhelming, as I knew this to be a possibility and yet we decided to try again. My wife is 18 wks and absolutely devastated, we have similar fears to Jill.

I am interested in what you all can offer about the mutation we are dealing with. I know that it tends to lend itself to more severe symptoms. Do any of you have children with homozygous Delta F508? If so, could you tell me more about what life is like.

Also, interested in how parents have explained this to other siblings (we have a 4 year old). Suggestions?

amay30 · Nov 6, 2007

My situation is similar but slightly different that than I have read here. I was dx at 27 when doing genetic testing on my first child (My wife was also a carrier). Both my mother and aunt are also CFers (mom is much healthier overall at 53, aunt is 45 and trying to get t-plant). I feel most fortunate as my mutation involves the R117, and so I am nearly asymptomatic.

My wife and I (despite the risk) chose to try for a second child, and just this morning had amnio results back. Our little girl is homozygous for Delta F508. My guilt is truly overwhelming, as I knew this to be a possibility and yet we decided to try again. My wife is 18 wks and absolutely devastated, we have similar fears to Jill.

I am interested in what you all can offer about the mutation we are dealing with. I know that it tends to lend itself to more severe symptoms. Do any of you have children with homozygous Delta F508? If so, could you tell me more about what life is like.

Also, interested in how parents have explained this to other siblings (we have a 4 year old). Suggestions?

amay30 · Nov 6, 2007

My situation is similar but slightly different that than I have read here. I was dx at 27 when doing genetic testing on my first child (My wife was also a carrier). Both my mother and aunt are also CFers (mom is much healthier overall at 53, aunt is 45 and trying to get t-plant). I feel most fortunate as my mutation involves the R117, and so I am nearly asymptomatic.

My wife and I (despite the risk) chose to try for a second child, and just this morning had amnio results back. Our little girl is homozygous for Delta F508. My guilt is truly overwhelming, as I knew this to be a possibility and yet we decided to try again. My wife is 18 wks and absolutely devastated, we have similar fears to Jill.

I am interested in what you all can offer about the mutation we are dealing with. I know that it tends to lend itself to more severe symptoms. Do any of you have children with homozygous Delta F508? If so, could you tell me more about what life is like.

Also, interested in how parents have explained this to other siblings (we have a 4 year old). Suggestions?

amay30 · Nov 6, 2007

My situation is similar but slightly different that than I have read here. I was dx at 27 when doing genetic testing on my first child (My wife was also a carrier). Both my mother and aunt are also CFers (mom is much healthier overall at 53, aunt is 45 and trying to get t-plant). I feel most fortunate as my mutation involves the R117, and so I am nearly asymptomatic.

My wife and I (despite the risk) chose to try for a second child, and just this morning had amnio results back. Our little girl is homozygous for Delta F508. My guilt is truly overwhelming, as I knew this to be a possibility and yet we decided to try again. My wife is 18 wks and absolutely devastated, we have similar fears to Jill.

I am interested in what you all can offer about the mutation we are dealing with. I know that it tends to lend itself to more severe symptoms. Do any of you have children with homozygous Delta F508? If so, could you tell me more about what life is like.

Also, interested in how parents have explained this to other siblings (we have a 4 year old). Suggestions?

amay30 · Nov 6, 2007

My situation is similar but slightly different that than I have read here. I was dx at 27 when doing genetic testing on my first child (My wife was also a carrier). Both my mother and aunt are also CFers (mom is much healthier overall at 53, aunt is 45 and trying to get t-plant). I feel most fortunate as my mutation involves the R117, and so I am nearly asymptomatic.

My wife and I (despite the risk) chose to try for a second child, and just this morning had amnio results back. Our little girl is homozygous for Delta F508. My guilt is truly overwhelming, as I knew this to be a possibility and yet we decided to try again. My wife is 18 wks and absolutely devastated, we have similar fears to Jill.

I am interested in what you all can offer about the mutation we are dealing with. I know that it tends to lend itself to more severe symptoms. Do any of you have children with homozygous Delta F508? If so, could you tell me more about what life is like.

Also, interested in how parents have explained this to other siblings (we have a 4 year old). Suggestions?

Pregnant-child diagnosed

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