To adults and teens with CF

JosephinesMommy · Mar 13, 2009

My daughter is 4 months old and was diagnosed with CF after being born with a meconium ileus. She is my world and I love her so much. Beside her being skinny and taking medications you would never know she was "sick". My husband and I want to have more children. We want our daughter to have siblings like we both did, to have the family we always wanted. So herein lies my question that can only be answered by you.

If your parents had another child ( I know for some it isn't possible but if the COULD), knowing they carried the cf gene and taking the chance anyway, how would you feel?

If your parents decided to do IVF/PGD to gaurantee that the new child wouldn't have CF, how would that make you feel?

I don't want my daughter to resent me or the decisions I make.

If there are any out there whose parents knew about the gene and had you and you have CF, how does it make you feel?

I am struggling with what to do. I want to leave it in God's hands but I also want a healthy baby and to not inflict harm...

If you don't want to answer here please message me or I am on Facebook at:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.facebook.com/home.php#/group.php?gid=52729183958
">http://www.facebook.com/home.p...p.php?gid=52729183958
</a>
Thank you all for your input!

JosephinesMommy · Mar 13, 2009

My daughter is 4 months old and was diagnosed with CF after being born with a meconium ileus. She is my world and I love her so much. Beside her being skinny and taking medications you would never know she was "sick". My husband and I want to have more children. We want our daughter to have siblings like we both did, to have the family we always wanted. So herein lies my question that can only be answered by you.

If your parents had another child ( I know for some it isn't possible but if the COULD), knowing they carried the cf gene and taking the chance anyway, how would you feel?

If your parents decided to do IVF/PGD to gaurantee that the new child wouldn't have CF, how would that make you feel?

I don't want my daughter to resent me or the decisions I make.

If there are any out there whose parents knew about the gene and had you and you have CF, how does it make you feel?

I am struggling with what to do. I want to leave it in God's hands but I also want a healthy baby and to not inflict harm...

If you don't want to answer here please message me or I am on Facebook at:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.facebook.com/home.php#/group.php?gid=52729183958
">http://www.facebook.com/home.p...p.php?gid=52729183958
</a>
Thank you all for your input!

JosephinesMommy · Mar 13, 2009

My daughter is 4 months old and was diagnosed with CF after being born with a meconium ileus. She is my world and I love her so much. Beside her being skinny and taking medications you would never know she was "sick". My husband and I want to have more children. We want our daughter to have siblings like we both did, to have the family we always wanted. So herein lies my question that can only be answered by you.

If your parents had another child ( I know for some it isn't possible but if the COULD), knowing they carried the cf gene and taking the chance anyway, how would you feel?

If your parents decided to do IVF/PGD to gaurantee that the new child wouldn't have CF, how would that make you feel?

I don't want my daughter to resent me or the decisions I make.

If there are any out there whose parents knew about the gene and had you and you have CF, how does it make you feel?

I am struggling with what to do. I want to leave it in God's hands but I also want a healthy baby and to not inflict harm...

If you don't want to answer here please message me or I am on Facebook at:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.facebook.com/home.php#/group.php?gid=52729183958
">http://www.facebook.com/home.p...p.php?gid=52729183958
</a>
Thank you all for your input!

JosephinesMommy · Mar 13, 2009

My daughter is 4 months old and was diagnosed with CF after being born with a meconium ileus. She is my world and I love her so much. Beside her being skinny and taking medications you would never know she was "sick". My husband and I want to have more children. We want our daughter to have siblings like we both did, to have the family we always wanted. So herein lies my question that can only be answered by you.

If your parents had another child ( I know for some it isn't possible but if the COULD), knowing they carried the cf gene and taking the chance anyway, how would you feel?

If your parents decided to do IVF/PGD to gaurantee that the new child wouldn't have CF, how would that make you feel?

I don't want my daughter to resent me or the decisions I make.

If there are any out there whose parents knew about the gene and had you and you have CF, how does it make you feel?

I am struggling with what to do. I want to leave it in God's hands but I also want a healthy baby and to not inflict harm...

If you don't want to answer here please message me or I am on Facebook at:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.facebook.com/home.php#/group.php?gid=52729183958
">http://www.facebook.com/home.p...p.php?gid=52729183958
</a>
Thank you all for your input!

JosephinesMommy · Mar 13, 2009

My daughter is 4 months old and was diagnosed with CF after being born with a meconium ileus. She is my world and I love her so much. Beside her being skinny and taking medications you would never know she was "sick". My husband and I want to have more children. We want our daughter to have siblings like we both did, to have the family we always wanted. So herein lies my question that can only be answered by you.
 
 If your parents had another child ( I know for some it isn't possible but if the COULD), knowing they carried the cf gene and taking the chance anyway, how would you feel?
 
 If your parents decided to do IVF/PGD to gaurantee that the new child wouldn't have CF, how would that make you feel?
 
 I don't want my daughter to resent me or the decisions I make.
 
 If there are any out there whose parents knew about the gene and had you and you have CF, how does it make you feel?
 
 I am struggling with what to do. I want to leave it in God's hands but I also want a healthy baby and to not inflict harm...
 
 If you don't want to answer here please message me or I am on Facebook at:
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.facebook.com/home.php#/group.php?gid=52729183958
">http://www.facebook.com/home.p...p.php?gid=52729183958
</a> 
 Thank you all for your input!

saveferris2009 · Mar 13, 2009

You're going to get a million different answers... no one wants to resent their parents.

But here's a perspective you may not have thought of - maybe God has given us the option of IVF/PGD. That could be God's work as well -giving the world the tools.

I'm not saying that's necessarily my belief, but it's a perspective I rarely here of. I typically only hear that IVF/PGD is not what God intended... but maybe there's another way to look at it.

My 2 cents - as a parent you want what's best for your child. Why would you ever knowingly risk harm to them by risking CF?

Parents often talk from the perspective of themselves - THEY want to have the kid. THEY feel the need to have another. These parents, many, have never had a serious, lifelong medical condition. You can try to understand what it's like, but you never truly know what it's like to struggle for a breath, to adjust life/career goals because of an illness. Imagine coping with that knowing that your parents knew this was possible for you?

Again, you'll hear many different views here.

Remember - life expectancy increasing doesn't necessarily mean the pain is less; or the treatment burden is less; or the cost of medicine is less; quantity doesn't always equate quality.

All the best to you ad your daughter.

saveferris2009 · Mar 13, 2009

You're going to get a million different answers... no one wants to resent their parents.

But here's a perspective you may not have thought of - maybe God has given us the option of IVF/PGD. That could be God's work as well -giving the world the tools.

I'm not saying that's necessarily my belief, but it's a perspective I rarely here of. I typically only hear that IVF/PGD is not what God intended... but maybe there's another way to look at it.

My 2 cents - as a parent you want what's best for your child. Why would you ever knowingly risk harm to them by risking CF?

Parents often talk from the perspective of themselves - THEY want to have the kid. THEY feel the need to have another. These parents, many, have never had a serious, lifelong medical condition. You can try to understand what it's like, but you never truly know what it's like to struggle for a breath, to adjust life/career goals because of an illness. Imagine coping with that knowing that your parents knew this was possible for you?

Again, you'll hear many different views here.

Remember - life expectancy increasing doesn't necessarily mean the pain is less; or the treatment burden is less; or the cost of medicine is less; quantity doesn't always equate quality.

All the best to you ad your daughter.

saveferris2009 · Mar 13, 2009

You're going to get a million different answers... no one wants to resent their parents.

But here's a perspective you may not have thought of - maybe God has given us the option of IVF/PGD. That could be God's work as well -giving the world the tools.

I'm not saying that's necessarily my belief, but it's a perspective I rarely here of. I typically only hear that IVF/PGD is not what God intended... but maybe there's another way to look at it.

My 2 cents - as a parent you want what's best for your child. Why would you ever knowingly risk harm to them by risking CF?

Parents often talk from the perspective of themselves - THEY want to have the kid. THEY feel the need to have another. These parents, many, have never had a serious, lifelong medical condition. You can try to understand what it's like, but you never truly know what it's like to struggle for a breath, to adjust life/career goals because of an illness. Imagine coping with that knowing that your parents knew this was possible for you?

Again, you'll hear many different views here.

Remember - life expectancy increasing doesn't necessarily mean the pain is less; or the treatment burden is less; or the cost of medicine is less; quantity doesn't always equate quality.

All the best to you ad your daughter.

saveferris2009 · Mar 13, 2009

You're going to get a million different answers... no one wants to resent their parents.

But here's a perspective you may not have thought of - maybe God has given us the option of IVF/PGD. That could be God's work as well -giving the world the tools.

I'm not saying that's necessarily my belief, but it's a perspective I rarely here of. I typically only hear that IVF/PGD is not what God intended... but maybe there's another way to look at it.

My 2 cents - as a parent you want what's best for your child. Why would you ever knowingly risk harm to them by risking CF?

Parents often talk from the perspective of themselves - THEY want to have the kid. THEY feel the need to have another. These parents, many, have never had a serious, lifelong medical condition. You can try to understand what it's like, but you never truly know what it's like to struggle for a breath, to adjust life/career goals because of an illness. Imagine coping with that knowing that your parents knew this was possible for you?

Again, you'll hear many different views here.

Remember - life expectancy increasing doesn't necessarily mean the pain is less; or the treatment burden is less; or the cost of medicine is less; quantity doesn't always equate quality.

All the best to you ad your daughter.

saveferris2009 · Mar 13, 2009

You're going to get a million different answers... no one wants to resent their parents.
 
 But here's a perspective you may not have thought of - maybe God has given us the option of IVF/PGD. That could be God's work as well -giving the world the tools.
 
 I'm not saying that's necessarily my belief, but it's a perspective I rarely here of. I typically only hear that IVF/PGD is not what God intended... but maybe there's another way to look at it.
 
 My 2 cents - as a parent you want what's best for your child. Why would you ever knowingly risk harm to them by risking CF?
 
 Parents often talk from the perspective of themselves - THEY want to have the kid. THEY feel the need to have another. These parents, many, have never had a serious, lifelong medical condition. You can try to understand what it's like, but you never truly know what it's like to struggle for a breath, to adjust life/career goals because of an illness. Imagine coping with that knowing that your parents knew this was possible for you?
 
 Again, you'll hear many different views here.
 
 Remember - life expectancy increasing doesn't necessarily mean the pain is less; or the treatment burden is less; or the cost of medicine is less; quantity doesn't always equate quality.
 
 All the best to you ad your daughter.

soderick · Mar 14, 2009

I understand your dilemma. I know I'm still young, but I have already decided that if I have kids, my partner will be tested for CF, and if he's a carrier, we would adopt. I don't want to put a child through the pain of having CF. At the same time, I look at my life and realize that it has been such a blessing. I would never trade my life with someone else's, even if it meant no CF. I am so grateful that I was given the chance to live; I'm almost happy it was uncommon at the time to do prenatal testing because my parents very well could have chosen to terminate the pregnancy. There has never been one day that I wished I hadn't been born because of CF.

Not only did I have a wonderful life, but my parents decided to have another baby. They had prenatal testing done and found out that my brother was not even a carrier of the CF gene. I once asked my mom if she would have terminated the pregnancy had he tested positive for CF, and she said probably not.

That's my two cents. I don't know how much it helps you. I do not have a child of my own, so I can't begin to advise you. All I can say is that my life has been worth it, CF and all, and I think my family would agree.

soderick · Mar 14, 2009

I understand your dilemma. I know I'm still young, but I have already decided that if I have kids, my partner will be tested for CF, and if he's a carrier, we would adopt. I don't want to put a child through the pain of having CF. At the same time, I look at my life and realize that it has been such a blessing. I would never trade my life with someone else's, even if it meant no CF. I am so grateful that I was given the chance to live; I'm almost happy it was uncommon at the time to do prenatal testing because my parents very well could have chosen to terminate the pregnancy. There has never been one day that I wished I hadn't been born because of CF.

Not only did I have a wonderful life, but my parents decided to have another baby. They had prenatal testing done and found out that my brother was not even a carrier of the CF gene. I once asked my mom if she would have terminated the pregnancy had he tested positive for CF, and she said probably not.

That's my two cents. I don't know how much it helps you. I do not have a child of my own, so I can't begin to advise you. All I can say is that my life has been worth it, CF and all, and I think my family would agree.

soderick · Mar 14, 2009

I understand your dilemma. I know I'm still young, but I have already decided that if I have kids, my partner will be tested for CF, and if he's a carrier, we would adopt. I don't want to put a child through the pain of having CF. At the same time, I look at my life and realize that it has been such a blessing. I would never trade my life with someone else's, even if it meant no CF. I am so grateful that I was given the chance to live; I'm almost happy it was uncommon at the time to do prenatal testing because my parents very well could have chosen to terminate the pregnancy. There has never been one day that I wished I hadn't been born because of CF.

Not only did I have a wonderful life, but my parents decided to have another baby. They had prenatal testing done and found out that my brother was not even a carrier of the CF gene. I once asked my mom if she would have terminated the pregnancy had he tested positive for CF, and she said probably not.

That's my two cents. I don't know how much it helps you. I do not have a child of my own, so I can't begin to advise you. All I can say is that my life has been worth it, CF and all, and I think my family would agree.

soderick · Mar 14, 2009

I understand your dilemma. I know I'm still young, but I have already decided that if I have kids, my partner will be tested for CF, and if he's a carrier, we would adopt. I don't want to put a child through the pain of having CF. At the same time, I look at my life and realize that it has been such a blessing. I would never trade my life with someone else's, even if it meant no CF. I am so grateful that I was given the chance to live; I'm almost happy it was uncommon at the time to do prenatal testing because my parents very well could have chosen to terminate the pregnancy. There has never been one day that I wished I hadn't been born because of CF.

Not only did I have a wonderful life, but my parents decided to have another baby. They had prenatal testing done and found out that my brother was not even a carrier of the CF gene. I once asked my mom if she would have terminated the pregnancy had he tested positive for CF, and she said probably not.

That's my two cents. I don't know how much it helps you. I do not have a child of my own, so I can't begin to advise you. All I can say is that my life has been worth it, CF and all, and I think my family would agree.

soderick · Mar 14, 2009

I understand your dilemma. I know I'm still young, but I have already decided that if I have kids, my partner will be tested for CF, and if he's a carrier, we would adopt. I don't want to put a child through the pain of having CF. At the same time, I look at my life and realize that it has been such a blessing. I would never trade my life with someone else's, even if it meant no CF. I am so grateful that I was given the chance to live; I'm almost happy it was uncommon at the time to do prenatal testing because my parents very well could have chosen to terminate the pregnancy. There has never been one day that I wished I hadn't been born because of CF.
 
 Not only did I have a wonderful life, but my parents decided to have another baby. They had prenatal testing done and found out that my brother was not even a carrier of the CF gene. I once asked my mom if she would have terminated the pregnancy had he tested positive for CF, and she said probably not.
 
 That's my two cents. I don't know how much it helps you. I do not have a child of my own, so I can't begin to advise you. All I can say is that my life has been worth it, CF and all, and I think my family would agree.

MicheleGazelle · Mar 14, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: JosephinesMommy

I am struggling with what to do. I want to leave it in God's hands but I also want a healthy baby and to not inflict harm...
</end quote></div>

I can't answer your other questions. I was in my thirties when I was diagnosed and my sons were 14 and 11 when my oldest was diagnosed. So we just didn't know about it when deciding how many kids to have. But something that usually helps me when I have a weighty decision to make is to set a date in the future for making the decision and until then, read, research, discuss, etc. but refrain from deciding. For something so big, I might give myself 6 months to a year. Just knowing I don't have to decide today makes it easier. And it makes me feel more free when I am talking to people and otherwise doing research. It frees me up to absorb all the information without trying to frame it as "pro" or "con" whichever way I am currently leaning.

Good luck with this.

MicheleGazelle · Mar 14, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: JosephinesMommy

I am struggling with what to do. I want to leave it in God's hands but I also want a healthy baby and to not inflict harm...
</end quote></div>

I can't answer your other questions. I was in my thirties when I was diagnosed and my sons were 14 and 11 when my oldest was diagnosed. So we just didn't know about it when deciding how many kids to have. But something that usually helps me when I have a weighty decision to make is to set a date in the future for making the decision and until then, read, research, discuss, etc. but refrain from deciding. For something so big, I might give myself 6 months to a year. Just knowing I don't have to decide today makes it easier. And it makes me feel more free when I am talking to people and otherwise doing research. It frees me up to absorb all the information without trying to frame it as "pro" or "con" whichever way I am currently leaning.

Good luck with this.

MicheleGazelle · Mar 14, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: JosephinesMommy

I am struggling with what to do. I want to leave it in God's hands but I also want a healthy baby and to not inflict harm...
</end quote></div>

I can't answer your other questions. I was in my thirties when I was diagnosed and my sons were 14 and 11 when my oldest was diagnosed. So we just didn't know about it when deciding how many kids to have. But something that usually helps me when I have a weighty decision to make is to set a date in the future for making the decision and until then, read, research, discuss, etc. but refrain from deciding. For something so big, I might give myself 6 months to a year. Just knowing I don't have to decide today makes it easier. And it makes me feel more free when I am talking to people and otherwise doing research. It frees me up to absorb all the information without trying to frame it as "pro" or "con" whichever way I am currently leaning.

Good luck with this.

MicheleGazelle · Mar 14, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: JosephinesMommy

I am struggling with what to do. I want to leave it in God's hands but I also want a healthy baby and to not inflict harm...
</end quote>

I can't answer your other questions. I was in my thirties when I was diagnosed and my sons were 14 and 11 when my oldest was diagnosed. So we just didn't know about it when deciding how many kids to have. But something that usually helps me when I have a weighty decision to make is to set a date in the future for making the decision and until then, read, research, discuss, etc. but refrain from deciding. For something so big, I might give myself 6 months to a year. Just knowing I don't have to decide today makes it easier. And it makes me feel more free when I am talking to people and otherwise doing research. It frees me up to absorb all the information without trying to frame it as "pro" or "con" whichever way I am currently leaning.

Good luck with this.

MicheleGazelle · Mar 14, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: JosephinesMommy
 
 I am struggling with what to do. I want to leave it in God's hands but I also want a healthy baby and to not inflict harm...
 </end quote>
 
 I can't answer your other questions. I was in my thirties when I was diagnosed and my sons were 14 and 11 when my oldest was diagnosed. So we just didn't know about it when deciding how many kids to have. But something that usually helps me when I have a weighty decision to make is to set a date in the future for making the decision and until then, read, research, discuss, etc. but refrain from deciding. For something so big, I might give myself 6 months to a year. Just knowing I don't have to decide today makes it easier. And it makes me feel more free when I am talking to people and otherwise doing research. It frees me up to absorb all the information without trying to frame it as "pro" or "con" whichever way I am currently leaning.
 
 Good luck with this.

To adults and teens with CF

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