To have more children (with possible CF) or not

[sknoell]

Hello All,
I need a few opinions for adults living with CF. I am a mother with 2 children (1 w/cf, 1 without). I love my children more then life itself and would love another child. We were planning another one when my son was diagnosed at 2. Well that put our plans on hold. The topic has come up again and we cannot afford IVF with PGD so our only option is to try for another child and take our chances. Our son has 2 really rare mutations and is extremely healthy (no pancreas problems and mild lung problems) and he has never been hospitalized at 5 years of age. Anyway, this is where my question comes in. My husband is afraid the next child, if it should have CF, will resent us for having them knowing that they could be sick. I tell him that it is crazy and if we give them a loving home and life that they won't feel that way and will be happy to be alive. Was wondering if anyone with CF out there were born after their parents new they carried the genes and took the chance anyway, and how as a person with CF, they feel about that?

Any insight would be greatly appreciated.

Thanks.

 

[sknoell]

Hello All,
I need a few opinions for adults living with CF. I am a mother with 2 children (1 w/cf, 1 without). I love my children more then life itself and would love another child. We were planning another one when my son was diagnosed at 2. Well that put our plans on hold. The topic has come up again and we cannot afford IVF with PGD so our only option is to try for another child and take our chances. Our son has 2 really rare mutations and is extremely healthy (no pancreas problems and mild lung problems) and he has never been hospitalized at 5 years of age. Anyway, this is where my question comes in. My husband is afraid the next child, if it should have CF, will resent us for having them knowing that they could be sick. I tell him that it is crazy and if we give them a loving home and life that they won't feel that way and will be happy to be alive. Was wondering if anyone with CF out there were born after their parents new they carried the genes and took the chance anyway, and how as a person with CF, they feel about that?

Any insight would be greatly appreciated.

Thanks.

 

[sknoell]

Hello All,
I need a few opinions for adults living with CF. I am a mother with 2 children (1 w/cf, 1 without). I love my children more then life itself and would love another child. We were planning another one when my son was diagnosed at 2. Well that put our plans on hold. The topic has come up again and we cannot afford IVF with PGD so our only option is to try for another child and take our chances. Our son has 2 really rare mutations and is extremely healthy (no pancreas problems and mild lung problems) and he has never been hospitalized at 5 years of age. Anyway, this is where my question comes in. My husband is afraid the next child, if it should have CF, will resent us for having them knowing that they could be sick. I tell him that it is crazy and if we give them a loving home and life that they won't feel that way and will be happy to be alive. Was wondering if anyone with CF out there were born after their parents new they carried the genes and took the chance anyway, and how as a person with CF, they feel about that?

Any insight would be greatly appreciated.

Thanks.

 

[blondelawyer]

Obviously this is a very personal decision, but I personally would not take that chance, and i know that my husband wouldn't. Because my husband has CF we have thought a lot about whether to try to have children, etc. As it stands right now, I have a 1 in 100 chance of being a carrier (I have been screened for the most common mutations), so there would be a 0.5% chance that our child would have CF--and for me that is too much of a risk. For you, as you know, there is a 25% chance that your child would have CF. While your son with cf is doing well, you never know what it would be like for the other child, even though they would have the same mutations. For me, it is an easy answer--it is not worth the chance, you have 2 wonderful children, enjoy and cherish them and don't take that chance. Just my 2 cents!

 

[blondelawyer]

Obviously this is a very personal decision, but I personally would not take that chance, and i know that my husband wouldn't. Because my husband has CF we have thought a lot about whether to try to have children, etc. As it stands right now, I have a 1 in 100 chance of being a carrier (I have been screened for the most common mutations), so there would be a 0.5% chance that our child would have CF--and for me that is too much of a risk. For you, as you know, there is a 25% chance that your child would have CF. While your son with cf is doing well, you never know what it would be like for the other child, even though they would have the same mutations. For me, it is an easy answer--it is not worth the chance, you have 2 wonderful children, enjoy and cherish them and don't take that chance. Just my 2 cents!

 

[blondelawyer]

Obviously this is a very personal decision, but I personally would not take that chance, and i know that my husband wouldn't. Because my husband has CF we have thought a lot about whether to try to have children, etc. As it stands right now, I have a 1 in 100 chance of being a carrier (I have been screened for the most common mutations), so there would be a 0.5% chance that our child would have CF--and for me that is too much of a risk. For you, as you know, there is a 25% chance that your child would have CF. While your son with cf is doing well, you never know what it would be like for the other child, even though they would have the same mutations. For me, it is an easy answer--it is not worth the chance, you have 2 wonderful children, enjoy and cherish them and don't take that chance. Just my 2 cents!

 

[Emily65Roses]

I advise against it. If you want another child and can't afford IVF and PGD and all that, look at adoption. If you want help, Allie is a wealth of information for adoption.

As for my opinion... your son is only 5. No offense, but you haven't seen CF get nasty yet. Especially if he's in good condition. Just because he is now doesn't mean he always will be. I was never on IVs until I was 16, now I go on them once or twice a year. You can't really make an educated decision on whether or not to risk another CF child when you haven't seen how it really gets down the road.

What it comes down to really... can you live with yourself knowing you've played Russian roulette (only with even crappier odds) with your child's health? What happens when the day comes and the kid understands genetics and asks why you risked to have a child when you knew the chances of CF popping up? What will you say? You can't really go in with the "Well it's only 25%" attitude, because <b><u>only</u> 25%</b> is an oxymoron. That's a good chance of CF.

Don't give a kid a CF life sentence just because <i>you</i> want more children. There are other ways of going about it, or you can just delight in the two you have already.

 

[Emily65Roses]

I advise against it. If you want another child and can't afford IVF and PGD and all that, look at adoption. If you want help, Allie is a wealth of information for adoption.

As for my opinion... your son is only 5. No offense, but you haven't seen CF get nasty yet. Especially if he's in good condition. Just because he is now doesn't mean he always will be. I was never on IVs until I was 16, now I go on them once or twice a year. You can't really make an educated decision on whether or not to risk another CF child when you haven't seen how it really gets down the road.

What it comes down to really... can you live with yourself knowing you've played Russian roulette (only with even crappier odds) with your child's health? What happens when the day comes and the kid understands genetics and asks why you risked to have a child when you knew the chances of CF popping up? What will you say? You can't really go in with the "Well it's only 25%" attitude, because <b><u>only</u> 25%</b> is an oxymoron. That's a good chance of CF.

Don't give a kid a CF life sentence just because <i>you</i> want more children. There are other ways of going about it, or you can just delight in the two you have already.

 

[Emily65Roses]

I advise against it. If you want another child and can't afford IVF and PGD and all that, look at adoption. If you want help, Allie is a wealth of information for adoption.

As for my opinion... your son is only 5. No offense, but you haven't seen CF get nasty yet. Especially if he's in good condition. Just because he is now doesn't mean he always will be. I was never on IVs until I was 16, now I go on them once or twice a year. You can't really make an educated decision on whether or not to risk another CF child when you haven't seen how it really gets down the road.

What it comes down to really... can you live with yourself knowing you've played Russian roulette (only with even crappier odds) with your child's health? What happens when the day comes and the kid understands genetics and asks why you risked to have a child when you knew the chances of CF popping up? What will you say? You can't really go in with the "Well it's only 25%" attitude, because <b><u>only</u> 25%</b> is an oxymoron. That's a good chance of CF.

Don't give a kid a CF life sentence just because <i>you</i> want more children. There are other ways of going about it, or you can just delight in the two you have already.

 

[JazzysMom]

I dont think this is something that you can predict how your child will think. Some might despise you, some might appreciate you gave them life. As far as your child not being "extremely healthy"......with CF there is no guarantee of when things will become an issue. No offense, but at 5 years old that doesnt mean anything to base a lifetime of CF on. I wasnt dx until I was 7. Looking back to that you would think I would have been a lot healthier at 39. I am not at tx level, but I am definitely challenged. This is obviously a very personal decision, but definitely one that is always a controversial one. To answer your question......as an adult CFer and a Mom, I would stick with the two children you have. Enjoy them. Give them all you can and appreciate what you have!!!!!!!!!!!

 

[JazzysMom]

I dont think this is something that you can predict how your child will think. Some might despise you, some might appreciate you gave them life. As far as your child not being "extremely healthy"......with CF there is no guarantee of when things will become an issue. No offense, but at 5 years old that doesnt mean anything to base a lifetime of CF on. I wasnt dx until I was 7. Looking back to that you would think I would have been a lot healthier at 39. I am not at tx level, but I am definitely challenged. This is obviously a very personal decision, but definitely one that is always a controversial one. To answer your question......as an adult CFer and a Mom, I would stick with the two children you have. Enjoy them. Give them all you can and appreciate what you have!!!!!!!!!!!

 

[JazzysMom]

I dont think this is something that you can predict how your child will think. Some might despise you, some might appreciate you gave them life. As far as your child not being "extremely healthy"......with CF there is no guarantee of when things will become an issue. No offense, but at 5 years old that doesnt mean anything to base a lifetime of CF on. I wasnt dx until I was 7. Looking back to that you would think I would have been a lot healthier at 39. I am not at tx level, but I am definitely challenged. This is obviously a very personal decision, but definitely one that is always a controversial one. To answer your question......as an adult CFer and a Mom, I would stick with the two children you have. Enjoy them. Give them all you can and appreciate what you have!!!!!!!!!!!

 

[Tess]

sknoell,

My parents have two of us with CF, My brother almost 27 and myself almost 25, my parents did everything they could for us and we were pretty healthy cfers growing up. I loved them for having given us each other to relate to. On the other hand I have had feelings of some resentment, though for the most part minor.
I love my parents for the up bring they gave me and the chance of a life, one that I intend on taking every chance of making a difference.
I have now got my own very loving and healthy 3 year old little girl. So although I have had feelings of resentment .... I know that they wanted me healthy or not, they were more than prepared for my arrival..... having had other children when they met, my brother they had together and still they wanted another child.... me. And for that I'm happy ..I completed their idea of a family.

It's a matter of how happy you make your childrens lives and how happy they make yours.

 

[Tess]

sknoell,

My parents have two of us with CF, My brother almost 27 and myself almost 25, my parents did everything they could for us and we were pretty healthy cfers growing up. I loved them for having given us each other to relate to. On the other hand I have had feelings of some resentment, though for the most part minor.
I love my parents for the up bring they gave me and the chance of a life, one that I intend on taking every chance of making a difference.
I have now got my own very loving and healthy 3 year old little girl. So although I have had feelings of resentment .... I know that they wanted me healthy or not, they were more than prepared for my arrival..... having had other children when they met, my brother they had together and still they wanted another child.... me. And for that I'm happy ..I completed their idea of a family.

It's a matter of how happy you make your childrens lives and how happy they make yours.

 

[Tess]

sknoell,

My parents have two of us with CF, My brother almost 27 and myself almost 25, my parents did everything they could for us and we were pretty healthy cfers growing up. I loved them for having given us each other to relate to. On the other hand I have had feelings of some resentment, though for the most part minor.
I love my parents for the up bring they gave me and the chance of a life, one that I intend on taking every chance of making a difference.
I have now got my own very loving and healthy 3 year old little girl. So although I have had feelings of resentment .... I know that they wanted me healthy or not, they were more than prepared for my arrival..... having had other children when they met, my brother they had together and still they wanted another child.... me. And for that I'm happy ..I completed their idea of a family.

It's a matter of how happy you make your childrens lives and how happy they make yours.

 

[sknoell]

Thanks to all for the information but I really was not looking for a lecrture on CF because I am well aware that it could get worse. I did not try to imply that it was easy. My biggest concern is I don't want my sick son to think we did not want a child who has CF and that we did not have any more because of that. I have 2 friends (with CF children) who chose to have more children and both were lucky to have non CF kids and are thinking of trying again.

To the person who mentioned adoption, we have looked at that as well and to be honest, it cost as much as IVF so if I can't afford IVF, I cannot afford adoption. You are talking at least $10 - $15k.

Specifically, I was looking for people who have CF whose parents knew it and still had them and how they feel about their parents and being born.</b></b>

 

[sknoell]

Thanks to all for the information but I really was not looking for a lecrture on CF because I am well aware that it could get worse. I did not try to imply that it was easy. My biggest concern is I don't want my sick son to think we did not want a child who has CF and that we did not have any more because of that. I have 2 friends (with CF children) who chose to have more children and both were lucky to have non CF kids and are thinking of trying again.

To the person who mentioned adoption, we have looked at that as well and to be honest, it cost as much as IVF so if I can't afford IVF, I cannot afford adoption. You are talking at least $10 - $15k.

Specifically, I was looking for people who have CF whose parents knew it and still had them and how they feel about their parents and being born.</b></b>

 

[sknoell]

Thanks to all for the information but I really was not looking for a lecrture on CF because I am well aware that it could get worse. I did not try to imply that it was easy. My biggest concern is I don't want my sick son to think we did not want a child who has CF and that we did not have any more because of that. I have 2 friends (with CF children) who chose to have more children and both were lucky to have non CF kids and are thinking of trying again.

To the person who mentioned adoption, we have looked at that as well and to be honest, it cost as much as IVF so if I can't afford IVF, I cannot afford adoption. You are talking at least $10 - $15k.

Specifically, I was looking for people who have CF whose parents knew it and still had them and how they feel about their parents and being born.</b></b>

 

[sknoell]

Tess, Thank you, you are the type of person I was looking for an answer from. Someone in that exact situation. Sounds like your parents did a great job with you. You sound very levelheaded.

 

[sknoell]

Tess, Thank you, you are the type of person I was looking for an answer from. Someone in that exact situation. Sounds like your parents did a great job with you. You sound very levelheaded.