More kids?

strider820 · Nov 17, 2009

Hi guys,

So, my wife and I found out with our first baby that we're both carriers for CF. Fortunately, our first child (now 18 months) isn't even a carrier, so we're pretty happy about that.

So we're struggling with the idea of having more kids. We both really want more kids of our own, but this whole CF thing has played a major role in our struggle. I was hoping to get a little bit of guidance from people that have CF, and people that have kids with CF. I have a few questions that I'd like to ask to help the ball get rolling.

Should CF be a show-stopper when thinking about having kids?

Does anyone have any experience with our mutations together (D1152H and Delta F508)? How has it presented itself? In the grand scheme of things, was it on any extreme of the CF scale? Is there anything you would want us to know about these mutations (either separate or together)?

How hard is it financially? I have really good health insurance from my work, but even with that, does it take a toll on the wallet?

How hard is it on the family? On your relationship as a couple? On your life, living with CF?

Thank you for any input you can give us. Really, we both want to just say have more kids, and figure it out later if the child has CF, but at the same time, we're so scared.

Joshua H

strider820 · Nov 17, 2009

Hi guys,

So, my wife and I found out with our first baby that we're both carriers for CF. Fortunately, our first child (now 18 months) isn't even a carrier, so we're pretty happy about that.

So we're struggling with the idea of having more kids. We both really want more kids of our own, but this whole CF thing has played a major role in our struggle. I was hoping to get a little bit of guidance from people that have CF, and people that have kids with CF. I have a few questions that I'd like to ask to help the ball get rolling.

Should CF be a show-stopper when thinking about having kids?

Does anyone have any experience with our mutations together (D1152H and Delta F508)? How has it presented itself? In the grand scheme of things, was it on any extreme of the CF scale? Is there anything you would want us to know about these mutations (either separate or together)?

How hard is it financially? I have really good health insurance from my work, but even with that, does it take a toll on the wallet?

How hard is it on the family? On your relationship as a couple? On your life, living with CF?

Thank you for any input you can give us. Really, we both want to just say have more kids, and figure it out later if the child has CF, but at the same time, we're so scared.

Joshua H

strider820 · Nov 17, 2009

Hi guys,

So, my wife and I found out with our first baby that we're both carriers for CF. Fortunately, our first child (now 18 months) isn't even a carrier, so we're pretty happy about that.

So we're struggling with the idea of having more kids. We both really want more kids of our own, but this whole CF thing has played a major role in our struggle. I was hoping to get a little bit of guidance from people that have CF, and people that have kids with CF. I have a few questions that I'd like to ask to help the ball get rolling.

Should CF be a show-stopper when thinking about having kids?

Does anyone have any experience with our mutations together (D1152H and Delta F508)? How has it presented itself? In the grand scheme of things, was it on any extreme of the CF scale? Is there anything you would want us to know about these mutations (either separate or together)?

How hard is it financially? I have really good health insurance from my work, but even with that, does it take a toll on the wallet?

How hard is it on the family? On your relationship as a couple? On your life, living with CF?

Thank you for any input you can give us. Really, we both want to just say have more kids, and figure it out later if the child has CF, but at the same time, we're so scared.

Joshua H

strider820 · Nov 17, 2009

Hi guys,

So, my wife and I found out with our first baby that we're both carriers for CF. Fortunately, our first child (now 18 months) isn't even a carrier, so we're pretty happy about that.

So we're struggling with the idea of having more kids. We both really want more kids of our own, but this whole CF thing has played a major role in our struggle. I was hoping to get a little bit of guidance from people that have CF, and people that have kids with CF. I have a few questions that I'd like to ask to help the ball get rolling.

Should CF be a show-stopper when thinking about having kids?

Does anyone have any experience with our mutations together (D1152H and Delta F508)? How has it presented itself? In the grand scheme of things, was it on any extreme of the CF scale? Is there anything you would want us to know about these mutations (either separate or together)?

How hard is it financially? I have really good health insurance from my work, but even with that, does it take a toll on the wallet?

How hard is it on the family? On your relationship as a couple? On your life, living with CF?

Thank you for any input you can give us. Really, we both want to just say have more kids, and figure it out later if the child has CF, but at the same time, we're so scared.

Joshua H

strider820 · Nov 17, 2009

Hi guys,
 
 So, my wife and I found out with our first baby that we're both carriers for CF. Fortunately, our first child (now 18 months) isn't even a carrier, so we're pretty happy about that.
 
 So we're struggling with the idea of having more kids. We both really want more kids of our own, but this whole CF thing has played a major role in our struggle. I was hoping to get a little bit of guidance from people that have CF, and people that have kids with CF. I have a few questions that I'd like to ask to help the ball get rolling.
 
 Should CF be a show-stopper when thinking about having kids?
 
 Does anyone have any experience with our mutations together (D1152H and Delta F508)? How has it presented itself? In the grand scheme of things, was it on any extreme of the CF scale? Is there anything you would want us to know about these mutations (either separate or together)?
 
 How hard is it financially? I have really good health insurance from my work, but even with that, does it take a toll on the wallet?
 
 How hard is it on the family? On your relationship as a couple? On your life, living with CF?
 
 Thank you for any input you can give us. Really, we both want to just say have more kids, and figure it out later if the child has CF, but at the same time, we're so scared.
 
 Joshua H

mlbliss · Nov 17, 2009

Hello,

This is a struggle that my family has had for a long time. Our 1st son has cf and is 5 years old. He is fortunate enough to have a very moderate case of cf, but even that is very exhausting and takes a small toll on family relationships. He still does chest pt for 1-1.5 hours a day and takes over 25 pills a day to digest foods and stay healthy. Right now he has full lung function and the only side effect of the cf for him is the treatments to help prevent further lung damage and he is more tired than most children.

We also have 2 other children. Our second was planned and we took a risk. We felt great when we found out he was healthy. Our third child was a happy accident and luckily was also healthy.

I think you should do what ever is best for your family and make sure that you know all about cf and possibly your genes if you can before you take the risk. For our family, we decided that we would love and take care of any challenges that presented themselves. We wanted to have kids and hoped for the best.

Good luck with your decision.

mlbliss · Nov 17, 2009

Hello,

This is a struggle that my family has had for a long time. Our 1st son has cf and is 5 years old. He is fortunate enough to have a very moderate case of cf, but even that is very exhausting and takes a small toll on family relationships. He still does chest pt for 1-1.5 hours a day and takes over 25 pills a day to digest foods and stay healthy. Right now he has full lung function and the only side effect of the cf for him is the treatments to help prevent further lung damage and he is more tired than most children.

We also have 2 other children. Our second was planned and we took a risk. We felt great when we found out he was healthy. Our third child was a happy accident and luckily was also healthy.

I think you should do what ever is best for your family and make sure that you know all about cf and possibly your genes if you can before you take the risk. For our family, we decided that we would love and take care of any challenges that presented themselves. We wanted to have kids and hoped for the best.

Good luck with your decision.

mlbliss · Nov 17, 2009

Hello,

This is a struggle that my family has had for a long time. Our 1st son has cf and is 5 years old. He is fortunate enough to have a very moderate case of cf, but even that is very exhausting and takes a small toll on family relationships. He still does chest pt for 1-1.5 hours a day and takes over 25 pills a day to digest foods and stay healthy. Right now he has full lung function and the only side effect of the cf for him is the treatments to help prevent further lung damage and he is more tired than most children.

We also have 2 other children. Our second was planned and we took a risk. We felt great when we found out he was healthy. Our third child was a happy accident and luckily was also healthy.

I think you should do what ever is best for your family and make sure that you know all about cf and possibly your genes if you can before you take the risk. For our family, we decided that we would love and take care of any challenges that presented themselves. We wanted to have kids and hoped for the best.

Good luck with your decision.

mlbliss · Nov 17, 2009

Hello,

This is a struggle that my family has had for a long time. Our 1st son has cf and is 5 years old. He is fortunate enough to have a very moderate case of cf, but even that is very exhausting and takes a small toll on family relationships. He still does chest pt for 1-1.5 hours a day and takes over 25 pills a day to digest foods and stay healthy. Right now he has full lung function and the only side effect of the cf for him is the treatments to help prevent further lung damage and he is more tired than most children.

We also have 2 other children. Our second was planned and we took a risk. We felt great when we found out he was healthy. Our third child was a happy accident and luckily was also healthy.

I think you should do what ever is best for your family and make sure that you know all about cf and possibly your genes if you can before you take the risk. For our family, we decided that we would love and take care of any challenges that presented themselves. We wanted to have kids and hoped for the best.

Good luck with your decision.

mlbliss · Nov 17, 2009

Hello,
 
 This is a struggle that my family has had for a long time. Our 1st son has cf and is 5 years old. He is fortunate enough to have a very moderate case of cf, but even that is very exhausting and takes a small toll on family relationships. He still does chest pt for 1-1.5 hours a day and takes over 25 pills a day to digest foods and stay healthy. Right now he has full lung function and the only side effect of the cf for him is the treatments to help prevent further lung damage and he is more tired than most children.
 
 We also have 2 other children. Our second was planned and we took a risk. We felt great when we found out he was healthy. Our third child was a happy accident and luckily was also healthy.
 
 I think you should do what ever is best for your family and make sure that you know all about cf and possibly your genes if you can before you take the risk. For our family, we decided that we would love and take care of any challenges that presented themselves. We wanted to have kids and hoped for the best.
 
 Good luck with your decision.

ctalbott0609 · Nov 17, 2009

I don't think that there is a clear cut answer here. I haven't been on the forums very long (only 5 months) but I know that this is an extremely controversial question.

I can tell you that my husband and I are talking about this same subject, and have been for quite some time. Matthew is my son, and his step-son; so he only has one biological child. He wants more, and I agree that he should be able to, but the "CF Factor" stops me from wanting to take that step. At the moment, we have no clear answer ourselves. I relate it to playing Russian Roulette with my child. I'm just not sure if I can condemn another one of my children to having a life shortening disease. It's very emotional for me.

Also, you can't predict CF by mutations. Each mutation is different in each person. There's a thread already started on this forum. I believe it's entitled "What mutation do you have" (or something similar) and it's a very good look at how true that fact is.

Financially, raising Paige hasn't been any different from any other child YET. Luckily, all of her medications are paid for by our insurance, and what our insurance doesn't cover, the pharmaceutical company who makes that drug, has a program to pay for it.

CF has been terrible on our family. There are a lot of arguments that have been had between myself, and family members who don't think her disease is as life threatening as they've read, or heard. There have been arguments between my husband, and myself about how to take care of her, and about her needs. As you will find on this forum, most marriages suffer greatly when it comes to CF. I say MOST, not ALL, so please, please, don't think that ALL marriages are doomed. Personally, as a mother with a CWCF, the emotional toll is indescribable. I have experienced every feeling in it's extreme and then some. Guilt is the most terrible, and most frequent of those. There are nights that I sit up just making sure she's breathing; and I wake from a dead sleep; and jump out of bed at every cough. Keep in mind, that my daughter is fairly healthy right now too. Not all babies are.

In short, please don't let my post discourage you. I'm merely answering your questions the very best I can, because this is a huge decision; and one that only you and your wife can make. No matter what though, you will do the right thing. No one can make this decision for you; and keep in mind that there's only a 1/4 chance that your baby could have it; and that no two mutations are the same; nor any two CFers.

ctalbott0609 · Nov 17, 2009

I don't think that there is a clear cut answer here. I haven't been on the forums very long (only 5 months) but I know that this is an extremely controversial question.

I can tell you that my husband and I are talking about this same subject, and have been for quite some time. Matthew is my son, and his step-son; so he only has one biological child. He wants more, and I agree that he should be able to, but the "CF Factor" stops me from wanting to take that step. At the moment, we have no clear answer ourselves. I relate it to playing Russian Roulette with my child. I'm just not sure if I can condemn another one of my children to having a life shortening disease. It's very emotional for me.

Also, you can't predict CF by mutations. Each mutation is different in each person. There's a thread already started on this forum. I believe it's entitled "What mutation do you have" (or something similar) and it's a very good look at how true that fact is.

Financially, raising Paige hasn't been any different from any other child YET. Luckily, all of her medications are paid for by our insurance, and what our insurance doesn't cover, the pharmaceutical company who makes that drug, has a program to pay for it.

CF has been terrible on our family. There are a lot of arguments that have been had between myself, and family members who don't think her disease is as life threatening as they've read, or heard. There have been arguments between my husband, and myself about how to take care of her, and about her needs. As you will find on this forum, most marriages suffer greatly when it comes to CF. I say MOST, not ALL, so please, please, don't think that ALL marriages are doomed. Personally, as a mother with a CWCF, the emotional toll is indescribable. I have experienced every feeling in it's extreme and then some. Guilt is the most terrible, and most frequent of those. There are nights that I sit up just making sure she's breathing; and I wake from a dead sleep; and jump out of bed at every cough. Keep in mind, that my daughter is fairly healthy right now too. Not all babies are.

In short, please don't let my post discourage you. I'm merely answering your questions the very best I can, because this is a huge decision; and one that only you and your wife can make. No matter what though, you will do the right thing. No one can make this decision for you; and keep in mind that there's only a 1/4 chance that your baby could have it; and that no two mutations are the same; nor any two CFers.

ctalbott0609 · Nov 17, 2009

I don't think that there is a clear cut answer here. I haven't been on the forums very long (only 5 months) but I know that this is an extremely controversial question.

I can tell you that my husband and I are talking about this same subject, and have been for quite some time. Matthew is my son, and his step-son; so he only has one biological child. He wants more, and I agree that he should be able to, but the "CF Factor" stops me from wanting to take that step. At the moment, we have no clear answer ourselves. I relate it to playing Russian Roulette with my child. I'm just not sure if I can condemn another one of my children to having a life shortening disease. It's very emotional for me.

Also, you can't predict CF by mutations. Each mutation is different in each person. There's a thread already started on this forum. I believe it's entitled "What mutation do you have" (or something similar) and it's a very good look at how true that fact is.

Financially, raising Paige hasn't been any different from any other child YET. Luckily, all of her medications are paid for by our insurance, and what our insurance doesn't cover, the pharmaceutical company who makes that drug, has a program to pay for it.

CF has been terrible on our family. There are a lot of arguments that have been had between myself, and family members who don't think her disease is as life threatening as they've read, or heard. There have been arguments between my husband, and myself about how to take care of her, and about her needs. As you will find on this forum, most marriages suffer greatly when it comes to CF. I say MOST, not ALL, so please, please, don't think that ALL marriages are doomed. Personally, as a mother with a CWCF, the emotional toll is indescribable. I have experienced every feeling in it's extreme and then some. Guilt is the most terrible, and most frequent of those. There are nights that I sit up just making sure she's breathing; and I wake from a dead sleep; and jump out of bed at every cough. Keep in mind, that my daughter is fairly healthy right now too. Not all babies are.

In short, please don't let my post discourage you. I'm merely answering your questions the very best I can, because this is a huge decision; and one that only you and your wife can make. No matter what though, you will do the right thing. No one can make this decision for you; and keep in mind that there's only a 1/4 chance that your baby could have it; and that no two mutations are the same; nor any two CFers.

ctalbott0609 · Nov 17, 2009

I don't think that there is a clear cut answer here. I haven't been on the forums very long (only 5 months) but I know that this is an extremely controversial question.

I can tell you that my husband and I are talking about this same subject, and have been for quite some time. Matthew is my son, and his step-son; so he only has one biological child. He wants more, and I agree that he should be able to, but the "CF Factor" stops me from wanting to take that step. At the moment, we have no clear answer ourselves. I relate it to playing Russian Roulette with my child. I'm just not sure if I can condemn another one of my children to having a life shortening disease. It's very emotional for me.

Also, you can't predict CF by mutations. Each mutation is different in each person. There's a thread already started on this forum. I believe it's entitled "What mutation do you have" (or something similar) and it's a very good look at how true that fact is.

Financially, raising Paige hasn't been any different from any other child YET. Luckily, all of her medications are paid for by our insurance, and what our insurance doesn't cover, the pharmaceutical company who makes that drug, has a program to pay for it.

CF has been terrible on our family. There are a lot of arguments that have been had between myself, and family members who don't think her disease is as life threatening as they've read, or heard. There have been arguments between my husband, and myself about how to take care of her, and about her needs. As you will find on this forum, most marriages suffer greatly when it comes to CF. I say MOST, not ALL, so please, please, don't think that ALL marriages are doomed. Personally, as a mother with a CWCF, the emotional toll is indescribable. I have experienced every feeling in it's extreme and then some. Guilt is the most terrible, and most frequent of those. There are nights that I sit up just making sure she's breathing; and I wake from a dead sleep; and jump out of bed at every cough. Keep in mind, that my daughter is fairly healthy right now too. Not all babies are.

In short, please don't let my post discourage you. I'm merely answering your questions the very best I can, because this is a huge decision; and one that only you and your wife can make. No matter what though, you will do the right thing. No one can make this decision for you; and keep in mind that there's only a 1/4 chance that your baby could have it; and that no two mutations are the same; nor any two CFers.

ctalbott0609 · Nov 17, 2009

I don't think that there is a clear cut answer here. I haven't been on the forums very long (only 5 months) but I know that this is an extremely controversial question.
 
 I can tell you that my husband and I are talking about this same subject, and have been for quite some time. Matthew is my son, and his step-son; so he only has one biological child. He wants more, and I agree that he should be able to, but the "CF Factor" stops me from wanting to take that step. At the moment, we have no clear answer ourselves. I relate it to playing Russian Roulette with my child. I'm just not sure if I can condemn another one of my children to having a life shortening disease. It's very emotional for me.
 
 Also, you can't predict CF by mutations. Each mutation is different in each person. There's a thread already started on this forum. I believe it's entitled "What mutation do you have" (or something similar) and it's a very good look at how true that fact is.
 
 Financially, raising Paige hasn't been any different from any other child YET. Luckily, all of her medications are paid for by our insurance, and what our insurance doesn't cover, the pharmaceutical company who makes that drug, has a program to pay for it.
 
 CF has been terrible on our family. There are a lot of arguments that have been had between myself, and family members who don't think her disease is as life threatening as they've read, or heard. There have been arguments between my husband, and myself about how to take care of her, and about her needs. As you will find on this forum, most marriages suffer greatly when it comes to CF. I say MOST, not ALL, so please, please, don't think that ALL marriages are doomed. Personally, as a mother with a CWCF, the emotional toll is indescribable. I have experienced every feeling in it's extreme and then some. Guilt is the most terrible, and most frequent of those. There are nights that I sit up just making sure she's breathing; and I wake from a dead sleep; and jump out of bed at every cough. Keep in mind, that my daughter is fairly healthy right now too. Not all babies are.
 
 In short, please don't let my post discourage you. I'm merely answering your questions the very best I can, because this is a huge decision; and one that only you and your wife can make. No matter what though, you will do the right thing. No one can make this decision for you; and keep in mind that there's only a 1/4 chance that your baby could have it; and that no two mutations are the same; nor any two CFers.

strider820 · Nov 17, 2009