More kids?

mneville · Nov 17, 2009

Strider....CF is hard emotionally, physically and financially even with good insurance! We have great insurance but miss a ton of work because of CF complications in our older son and still have a ton of bills. There is no way to tell of severity so if you are ready for worst case scenario..then you may get pleasantly surprised. You just never know.

Our oldest son is truly amazing and I am thrilled we have him but had we known we were carriers, we would have looked at our options which we did for our second. We did unndergo IVF/PGD and it worked! Our second son is now 2 and healthy as a horse...It was the best decision for our family. Check out genesisgenetics.com He invented PGD and has done the most CF cases in the world....

Megan, mom to Aidan 5 CF and Gavin 2 no CF

mneville · Nov 17, 2009

Strider....CF is hard emotionally, physically and financially even with good insurance! We have great insurance but miss a ton of work because of CF complications in our older son and still have a ton of bills. There is no way to tell of severity so if you are ready for worst case scenario..then you may get pleasantly surprised. You just never know.

Our oldest son is truly amazing and I am thrilled we have him but had we known we were carriers, we would have looked at our options which we did for our second. We did unndergo IVF/PGD and it worked! Our second son is now 2 and healthy as a horse...It was the best decision for our family. Check out genesisgenetics.com He invented PGD and has done the most CF cases in the world....

Megan, mom to Aidan 5 CF and Gavin 2 no CF

mneville · Nov 17, 2009

Strider....CF is hard emotionally, physically and financially even with good insurance! We have great insurance but miss a ton of work because of CF complications in our older son and still have a ton of bills. There is no way to tell of severity so if you are ready for worst case scenario..then you may get pleasantly surprised. You just never know.

Our oldest son is truly amazing and I am thrilled we have him but had we known we were carriers, we would have looked at our options which we did for our second. We did unndergo IVF/PGD and it worked! Our second son is now 2 and healthy as a horse...It was the best decision for our family. Check out genesisgenetics.com He invented PGD and has done the most CF cases in the world....

Megan, mom to Aidan 5 CF and Gavin 2 no CF

mneville · Nov 17, 2009

Strider....CF is hard emotionally, physically and financially even with good insurance! We have great insurance but miss a ton of work because of CF complications in our older son and still have a ton of bills. There is no way to tell of severity so if you are ready for worst case scenario..then you may get pleasantly surprised. You just never know.

Our oldest son is truly amazing and I am thrilled we have him but had we known we were carriers, we would have looked at our options which we did for our second. We did unndergo IVF/PGD and it worked! Our second son is now 2 and healthy as a horse...It was the best decision for our family. Check out genesisgenetics.com He invented PGD and has done the most CF cases in the world....

Megan, mom to Aidan 5 CF and Gavin 2 no CF

mneville · Nov 17, 2009

Strider....CF is hard emotionally, physically and financially even with good insurance! We have great insurance but miss a ton of work because of CF complications in our older son and still have a ton of bills. There is no way to tell of severity so if you are ready for worst case scenario..then you may get pleasantly surprised. You just never know.
 
 Our oldest son is truly amazing and I am thrilled we have him but had we known we were carriers, we would have looked at our options which we did for our second. We did unndergo IVF/PGD and it worked! Our second son is now 2 and healthy as a horse...It was the best decision for our family. Check out genesisgenetics.com He invented PGD and has done the most CF cases in the world....
 
 Megan, mom to Aidan 5 CF and Gavin 2 no CF

hmw · Nov 17, 2009

This is definitely one of the most emotionally charged/controversial subjects you'll find on this site.

My daughter wasn't diagnosed until a year ago, she's now 8.5. We knew a while ago that there was something seriously wrong though.

I love my children to no end and cannot imagine my life without ANY of them. And since Emily is my youngest and her dx came late, I never had to decide the way many people do whether or not to take the 25% chance of passing a fatal disease on to my child. As it is, I have still had to work through tremendous guilt since her dx knowing how she came to have this disease.

It is an enormous strain on our marriage. It impacts the rest of our family relationships as other relatives come to terms (or don't, in some cases) with the reality of this disease. It's changed everyday life in ways I could never have imagined, changed friendships.

Some/many people here never experienced parenthood or family life 'before' CF. We did. The impact it makes, having a child with a chronic disease that can be difficult and time-consuming to treat, changes the entire landscape of your family life. And Emily is NOT as severely impacted like many kids here! I frankly could not imagine her going through what many do and only pray my family is up to the challenge when that day comes.

I am not meaning to sound negative- but you ask what it is like, and this is reality in a less-than-perfect marriage, family with a less-than-perfect support system, etc. There are immense joys just like there are with any child. I love seeing her accomplishments and want her to achieve whatever she is physically able as she grows. We don't live in a morass of negativity here, honest- and I don't want my post to portray that. But these are the issues with which we cope.

I won't say anything is a 'deal-breaker'. Only YOUR family can decide that. But going into your decision fully informed with eyes wide open is the only way to do it, I believe.

eta> I think it's safe to say that eventually yes, cost and insurance will be issues. Maybe not now, but likely at some point. (If not for you, for your child when it comes time for them to insure themselves.) Meds, equipment, potential hospitalizations to treat this disease do not come cheap so having good insurance will always be an issue to consider... a long view to this will be essential.

hmw · Nov 17, 2009

This is definitely one of the most emotionally charged/controversial subjects you'll find on this site.

My daughter wasn't diagnosed until a year ago, she's now 8.5. We knew a while ago that there was something seriously wrong though.

I love my children to no end and cannot imagine my life without ANY of them. And since Emily is my youngest and her dx came late, I never had to decide the way many people do whether or not to take the 25% chance of passing a fatal disease on to my child. As it is, I have still had to work through tremendous guilt since her dx knowing how she came to have this disease.

It is an enormous strain on our marriage. It impacts the rest of our family relationships as other relatives come to terms (or don't, in some cases) with the reality of this disease. It's changed everyday life in ways I could never have imagined, changed friendships.

Some/many people here never experienced parenthood or family life 'before' CF. We did. The impact it makes, having a child with a chronic disease that can be difficult and time-consuming to treat, changes the entire landscape of your family life. And Emily is NOT as severely impacted like many kids here! I frankly could not imagine her going through what many do and only pray my family is up to the challenge when that day comes.

I am not meaning to sound negative- but you ask what it is like, and this is reality in a less-than-perfect marriage, family with a less-than-perfect support system, etc. There are immense joys just like there are with any child. I love seeing her accomplishments and want her to achieve whatever she is physically able as she grows. We don't live in a morass of negativity here, honest- and I don't want my post to portray that. But these are the issues with which we cope.

I won't say anything is a 'deal-breaker'. Only YOUR family can decide that. But going into your decision fully informed with eyes wide open is the only way to do it, I believe.

eta> I think it's safe to say that eventually yes, cost and insurance will be issues. Maybe not now, but likely at some point. (If not for you, for your child when it comes time for them to insure themselves.) Meds, equipment, potential hospitalizations to treat this disease do not come cheap so having good insurance will always be an issue to consider... a long view to this will be essential.

hmw · Nov 17, 2009

This is definitely one of the most emotionally charged/controversial subjects you'll find on this site.

My daughter wasn't diagnosed until a year ago, she's now 8.5. We knew a while ago that there was something seriously wrong though.

I love my children to no end and cannot imagine my life without ANY of them. And since Emily is my youngest and her dx came late, I never had to decide the way many people do whether or not to take the 25% chance of passing a fatal disease on to my child. As it is, I have still had to work through tremendous guilt since her dx knowing how she came to have this disease.

It is an enormous strain on our marriage. It impacts the rest of our family relationships as other relatives come to terms (or don't, in some cases) with the reality of this disease. It's changed everyday life in ways I could never have imagined, changed friendships.

Some/many people here never experienced parenthood or family life 'before' CF. We did. The impact it makes, having a child with a chronic disease that can be difficult and time-consuming to treat, changes the entire landscape of your family life. And Emily is NOT as severely impacted like many kids here! I frankly could not imagine her going through what many do and only pray my family is up to the challenge when that day comes.

I am not meaning to sound negative- but you ask what it is like, and this is reality in a less-than-perfect marriage, family with a less-than-perfect support system, etc. There are immense joys just like there are with any child. I love seeing her accomplishments and want her to achieve whatever she is physically able as she grows. We don't live in a morass of negativity here, honest- and I don't want my post to portray that. But these are the issues with which we cope.

I won't say anything is a 'deal-breaker'. Only YOUR family can decide that. But going into your decision fully informed with eyes wide open is the only way to do it, I believe.

eta> I think it's safe to say that eventually yes, cost and insurance will be issues. Maybe not now, but likely at some point. (If not for you, for your child when it comes time for them to insure themselves.) Meds, equipment, potential hospitalizations to treat this disease do not come cheap so having good insurance will always be an issue to consider... a long view to this will be essential.

hmw · Nov 17, 2009

This is definitely one of the most emotionally charged/controversial subjects you'll find on this site.

My daughter wasn't diagnosed until a year ago, she's now 8.5. We knew a while ago that there was something seriously wrong though.

I love my children to no end and cannot imagine my life without ANY of them. And since Emily is my youngest and her dx came late, I never had to decide the way many people do whether or not to take the 25% chance of passing a fatal disease on to my child. As it is, I have still had to work through tremendous guilt since her dx knowing how she came to have this disease.

It is an enormous strain on our marriage. It impacts the rest of our family relationships as other relatives come to terms (or don't, in some cases) with the reality of this disease. It's changed everyday life in ways I could never have imagined, changed friendships.

Some/many people here never experienced parenthood or family life 'before' CF. We did. The impact it makes, having a child with a chronic disease that can be difficult and time-consuming to treat, changes the entire landscape of your family life. And Emily is NOT as severely impacted like many kids here! I frankly could not imagine her going through what many do and only pray my family is up to the challenge when that day comes.

I am not meaning to sound negative- but you ask what it is like, and this is reality in a less-than-perfect marriage, family with a less-than-perfect support system, etc. There are immense joys just like there are with any child. I love seeing her accomplishments and want her to achieve whatever she is physically able as she grows. We don't live in a morass of negativity here, honest- and I don't want my post to portray that. But these are the issues with which we cope.

I won't say anything is a 'deal-breaker'. Only YOUR family can decide that. But going into your decision fully informed with eyes wide open is the only way to do it, I believe.

eta> I think it's safe to say that eventually yes, cost and insurance will be issues. Maybe not now, but likely at some point. (If not for you, for your child when it comes time for them to insure themselves.) Meds, equipment, potential hospitalizations to treat this disease do not come cheap so having good insurance will always be an issue to consider... a long view to this will be essential.

hmw · Nov 17, 2009

This is definitely one of the most emotionally charged/controversial subjects you'll find on this site.
 
 My daughter wasn't diagnosed until a year ago, she's now 8.5. We knew a while ago that there was something seriously wrong though.
 
 I love my children to no end and cannot imagine my life without ANY of them. And since Emily is my youngest and her dx came late, I never had to decide the way many people do whether or not to take the 25% chance of passing a fatal disease on to my child. As it is, I have still had to work through tremendous guilt since her dx knowing how she came to have this disease.
 
 It is an enormous strain on our marriage. It impacts the rest of our family relationships as other relatives come to terms (or don't, in some cases) with the reality of this disease. It's changed everyday life in ways I could never have imagined, changed friendships.
 
 Some/many people here never experienced parenthood or family life 'before' CF. We did. The impact it makes, having a child with a chronic disease that can be difficult and time-consuming to treat, changes the entire landscape of your family life. And Emily is NOT as severely impacted like many kids here! I frankly could not imagine her going through what many do and only pray my family is up to the challenge when that day comes.
 
 I am not meaning to sound negative- but you ask what it is like, and this is reality in a less-than-perfect marriage, family with a less-than-perfect support system, etc. There are immense joys just like there are with any child. I love seeing her accomplishments and want her to achieve whatever she is physically able as she grows. We don't live in a morass of negativity here, honest- and I don't want my post to portray that. But these are the issues with which we cope.
 
 I won't say anything is a 'deal-breaker'. Only YOUR family can decide that. But going into your decision fully informed with eyes wide open is the only way to do it, I believe.
 
 eta> I think it's safe to say that eventually yes, cost and insurance will be issues. Maybe not now, but likely at some point. (If not for you, for your child when it comes time for them to insure themselves.) Meds, equipment, potential hospitalizations to treat this disease do not come cheap so having good insurance will always be an issue to consider... a long view to this will be essential.

kitomd21 · Nov 17, 2009

Our daughter has been doing well thus far, but there are no guarantees regarding her future health. It's a frightening future considering there are no absolutes - but are there really any absolutes regarding the health of any of us? A child may have CF and suffer or experience all that CF entails, yet fall ill to some entirely different disease. A child without CF may have a more life-threatening disease than CF. I'm not a parent in denial, but you cannot ignore the advances that have been made toward the treatment/management of CF.

My husband and I function as a team...we have absolutely never argued even once about our daughter's medications or treatments. If our family has an opinion about her health, we're able to agree or disagree and leave it at that. I have faith and strength in my husband and he in myself. There's a greater plan for our daughter other than having CF.

kitomd21 · Nov 17, 2009

Our daughter has been doing well thus far, but there are no guarantees regarding her future health. It's a frightening future considering there are no absolutes - but are there really any absolutes regarding the health of any of us? A child may have CF and suffer or experience all that CF entails, yet fall ill to some entirely different disease. A child without CF may have a more life-threatening disease than CF. I'm not a parent in denial, but you cannot ignore the advances that have been made toward the treatment/management of CF.

My husband and I function as a team...we have absolutely never argued even once about our daughter's medications or treatments. If our family has an opinion about her health, we're able to agree or disagree and leave it at that. I have faith and strength in my husband and he in myself. There's a greater plan for our daughter other than having CF.

kitomd21 · Nov 17, 2009

Our daughter has been doing well thus far, but there are no guarantees regarding her future health. It's a frightening future considering there are no absolutes - but are there really any absolutes regarding the health of any of us? A child may have CF and suffer or experience all that CF entails, yet fall ill to some entirely different disease. A child without CF may have a more life-threatening disease than CF. I'm not a parent in denial, but you cannot ignore the advances that have been made toward the treatment/management of CF.

My husband and I function as a team...we have absolutely never argued even once about our daughter's medications or treatments. If our family has an opinion about her health, we're able to agree or disagree and leave it at that. I have faith and strength in my husband and he in myself. There's a greater plan for our daughter other than having CF.

kitomd21 · Nov 17, 2009

Our daughter has been doing well thus far, but there are no guarantees regarding her future health. It's a frightening future considering there are no absolutes - but are there really any absolutes regarding the health of any of us? A child may have CF and suffer or experience all that CF entails, yet fall ill to some entirely different disease. A child without CF may have a more life-threatening disease than CF. I'm not a parent in denial, but you cannot ignore the advances that have been made toward the treatment/management of CF.

My husband and I function as a team...we have absolutely never argued even once about our daughter's medications or treatments. If our family has an opinion about her health, we're able to agree or disagree and leave it at that. I have faith and strength in my husband and he in myself. There's a greater plan for our daughter other than having CF.

kitomd21 · Nov 17, 2009

Our daughter has been doing well thus far, but there are no guarantees regarding her future health. It's a frightening future considering there are no absolutes - but are there really any absolutes regarding the health of any of us? A child may have CF and suffer or experience all that CF entails, yet fall ill to some entirely different disease. A child without CF may have a more life-threatening disease than CF. I'm not a parent in denial, but you cannot ignore the advances that have been made toward the treatment/management of CF.
 
 My husband and I function as a team...we have absolutely never argued even once about our daughter's medications or treatments. If our family has an opinion about her health, we're able to agree or disagree and leave it at that. I have faith and strength in my husband and he in myself. There's a greater plan for our daughter other than having CF.

amysmom · Nov 18, 2009

I would strongly recommend against it. We have one daughter with CF, not knowing we were carriers.

She's 28 years old now and has been very healthy, relatively speaking. When she's sick or sad or in pain, I thank God that we didn't have another baby, like we were trying to.

The overwhelming guilt that we knowingly brought a baby into the world that would suffer would have killed us.

We know families who've had second babies after the first had CF and the agony they go through having made that decision add so much heartache to the heartache of CF that it's almost unimaginable.

amysmom · Nov 18, 2009

I would strongly recommend against it. We have one daughter with CF, not knowing we were carriers.

She's 28 years old now and has been very healthy, relatively speaking. When she's sick or sad or in pain, I thank God that we didn't have another baby, like we were trying to.

The overwhelming guilt that we knowingly brought a baby into the world that would suffer would have killed us.

We know families who've had second babies after the first had CF and the agony they go through having made that decision add so much heartache to the heartache of CF that it's almost unimaginable.

amysmom · Nov 18, 2009

I would strongly recommend against it. We have one daughter with CF, not knowing we were carriers.

She's 28 years old now and has been very healthy, relatively speaking. When she's sick or sad or in pain, I thank God that we didn't have another baby, like we were trying to.

The overwhelming guilt that we knowingly brought a baby into the world that would suffer would have killed us.

We know families who've had second babies after the first had CF and the agony they go through having made that decision add so much heartache to the heartache of CF that it's almost unimaginable.

amysmom · Nov 18, 2009

I would strongly recommend against it. We have one daughter with CF, not knowing we were carriers.

She's 28 years old now and has been very healthy, relatively speaking. When she's sick or sad or in pain, I thank God that we didn't have another baby, like we were trying to.

The overwhelming guilt that we knowingly brought a baby into the world that would suffer would have killed us.

We know families who've had second babies after the first had CF and the agony they go through having made that decision add so much heartache to the heartache of CF that it's almost unimaginable.

amysmom · Nov 18, 2009

I would strongly recommend against it. We have one daughter with CF, not knowing we were carriers.
 
 She's 28 years old now and has been very healthy, relatively speaking. When she's sick or sad or in pain, I thank God that we didn't have another baby, like we were trying to.
 
 The overwhelming guilt that we knowingly brought a baby into the world that would suffer would have killed us.
 
 We know families who've had second babies after the first had CF and the agony they go through having made that decision add so much heartache to the heartache of CF that it's almost unimaginable.

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