To have more children (with possible CF) or not

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mneville</b></i>
So our docs are telling us very different things than what you heard years ago. But until there is a cure, we would not take the chance.

</end quote></div>


Supports my theory that many parents on here are in denial about what this disease can bring. Even if you get treatment from day one.......

One day, you'll see too.....

 

[dyza]

I'm certainly not in denial. In the UK there are 7,500 PWCF. 5 babies with CF are born each week, and each week 3 PWCF die. I live and hope that Craig will have as long a life as possible, my only concern is that when he reaches his mid-20s, I will be into my mid-60s. And when he needs us the most, the chances of me being there to help him, well, are slim. In the meantime myself and the missus are learning as much as possible and hope to pass as much onto Craig, and his sister as we possible can.
Jump on this if you want, but what I just wrote was extremely difficult to write, as a parent you have such a different perspective.
Craig

 

[dyza]

I'm certainly not in denial. In the UK there are 7,500 PWCF. 5 babies with CF are born each week, and each week 3 PWCF die. I live and hope that Craig will have as long a life as possible, my only concern is that when he reaches his mid-20s, I will be into my mid-60s. And when he needs us the most, the chances of me being there to help him, well, are slim. In the meantime myself and the missus are learning as much as possible and hope to pass as much onto Craig, and his sister as we possible can.
Jump on this if you want, but what I just wrote was extremely difficult to write, as a parent you have such a different perspective.
Craig

 

[dyza]

I'm certainly not in denial. In the UK there are 7,500 PWCF. 5 babies with CF are born each week, and each week 3 PWCF die. I live and hope that Craig will have as long a life as possible, my only concern is that when he reaches his mid-20s, I will be into my mid-60s. And when he needs us the most, the chances of me being there to help him, well, are slim. In the meantime myself and the missus are learning as much as possible and hope to pass as much onto Craig, and his sister as we possible can.
Jump on this if you want, but what I just wrote was extremely difficult to write, as a parent you have such a different perspective.
Craig

 

[concernedmom]

I just had to comment on this:

<div class="FTQUOTE"><begin quote>Of course, I have no idea why I'm even commenting because all of the "pro-lifers" will make excuses until their faces turn blue, despite facts, moral or otherwise... </end quote></div>

Pro-life/pro-choice has nothing to do with <i><b>this specific topic</b></i>. I'm pro-life. That said, I still would not choose to have another child knowing that my husband and myself are both carriers. I've had my tubes tied. Personally, I think having a child that is genetically yours is overrated. Overrated in the sense that, once the child is placed in your arms, and is <i>"your"</i> child, regardless of whether you share DNA with that child, you will love him/her more than you thought possible. And, on adoption, there is also a lot to be said for foster-adopting. We have not gone that route but have a family member doing that currently. It's a wonderful way to give a home to an existing child.

All that said, in the end, regardless of my thoughts on the subject, <i><b>it is not my place to judge the choices of others.</b></i> To the OP, good luck in your decision.

 

[concernedmom]

I just had to comment on this:

<div class="FTQUOTE"><begin quote>Of course, I have no idea why I'm even commenting because all of the "pro-lifers" will make excuses until their faces turn blue, despite facts, moral or otherwise... </end quote></div>

Pro-life/pro-choice has nothing to do with <i><b>this specific topic</b></i>. I'm pro-life. That said, I still would not choose to have another child knowing that my husband and myself are both carriers. I've had my tubes tied. Personally, I think having a child that is genetically yours is overrated. Overrated in the sense that, once the child is placed in your arms, and is <i>"your"</i> child, regardless of whether you share DNA with that child, you will love him/her more than you thought possible. And, on adoption, there is also a lot to be said for foster-adopting. We have not gone that route but have a family member doing that currently. It's a wonderful way to give a home to an existing child.

All that said, in the end, regardless of my thoughts on the subject, <i><b>it is not my place to judge the choices of others.</b></i> To the OP, good luck in your decision.

 

[concernedmom]

I just had to comment on this:

<div class="FTQUOTE"><begin quote>Of course, I have no idea why I'm even commenting because all of the "pro-lifers" will make excuses until their faces turn blue, despite facts, moral or otherwise... </end quote></div>

Pro-life/pro-choice has nothing to do with <i><b>this specific topic</b></i>. I'm pro-life. That said, I still would not choose to have another child knowing that my husband and myself are both carriers. I've had my tubes tied. Personally, I think having a child that is genetically yours is overrated. Overrated in the sense that, once the child is placed in your arms, and is <i>"your"</i> child, regardless of whether you share DNA with that child, you will love him/her more than you thought possible. And, on adoption, there is also a lot to be said for foster-adopting. We have not gone that route but have a family member doing that currently. It's a wonderful way to give a home to an existing child.

All that said, in the end, regardless of my thoughts on the subject, <i><b>it is not my place to judge the choices of others.</b></i> To the OP, good luck in your decision.

 

[LisaV]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

nevermind. Too knee-jerky to respond.</end quote></div>

lol
that's why I haven't commented either....

and what do you say to someone who seems to want to base their decisions on only the first few years of a progressive terminal illness?
what do I know about the first 6.
IMHO I don't think one should decide these things just on the quality of the first six years of someone's life - nor on the last six. But from experience I can sure tell you that the last six are tough .....

 

[LisaV]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

nevermind. Too knee-jerky to respond.</end quote></div>

lol
that's why I haven't commented either....

and what do you say to someone who seems to want to base their decisions on only the first few years of a progressive terminal illness?
what do I know about the first 6.
IMHO I don't think one should decide these things just on the quality of the first six years of someone's life - nor on the last six. But from experience I can sure tell you that the last six are tough .....

 

[LisaV]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

nevermind. Too knee-jerky to respond.</end quote></div>

lol
that's why I haven't commented either....

and what do you say to someone who seems to want to base their decisions on only the first few years of a progressive terminal illness?
what do I know about the first 6.
IMHO I don't think one should decide these things just on the quality of the first six years of someone's life - nor on the last six. But from experience I can sure tell you that the last six are tough .....

 

[Mommy2Alysa]

I am currently pregnant again with a child with CF. We already have a 2 year old with CF and like you, we couldnt afford IVF or even knew about it when I got preg again.

At first when I found out the amnio results I was shocked and upset but then I thought abuot it and realized that now Alysa, my two year old, will have someone to relate to, talk to, and give support to.

I didnt want Alysa having CF to be our reason NOT to have another child or SHE may resent us and feel bad thinking that "Mommy and Daddy didnt want another child who coul dbe sick like me".

It will be a hard struggle but luckily she isnt that severe yet and like I said before, she will be able to relate to this baby and not feel like an outsider in a sense.

Neither my husband or I have CF so we cant give Alysa the support she needs. Maybe her little brother/sister can.

Hope this helps.

 

[Mommy2Alysa]

I am currently pregnant again with a child with CF. We already have a 2 year old with CF and like you, we couldnt afford IVF or even knew about it when I got preg again.

At first when I found out the amnio results I was shocked and upset but then I thought abuot it and realized that now Alysa, my two year old, will have someone to relate to, talk to, and give support to.

I didnt want Alysa having CF to be our reason NOT to have another child or SHE may resent us and feel bad thinking that "Mommy and Daddy didnt want another child who coul dbe sick like me".

It will be a hard struggle but luckily she isnt that severe yet and like I said before, she will be able to relate to this baby and not feel like an outsider in a sense.

Neither my husband or I have CF so we cant give Alysa the support she needs. Maybe her little brother/sister can.

Hope this helps.

 

[Mommy2Alysa]

I am currently pregnant again with a child with CF. We already have a 2 year old with CF and like you, we couldnt afford IVF or even knew about it when I got preg again.

At first when I found out the amnio results I was shocked and upset but then I thought abuot it and realized that now Alysa, my two year old, will have someone to relate to, talk to, and give support to.

I didnt want Alysa having CF to be our reason NOT to have another child or SHE may resent us and feel bad thinking that "Mommy and Daddy didnt want another child who coul dbe sick like me".

It will be a hard struggle but luckily she isnt that severe yet and like I said before, she will be able to relate to this baby and not feel like an outsider in a sense.

Neither my husband or I have CF so we cant give Alysa the support she needs. Maybe her little brother/sister can.

Hope this helps.

 

[Mommy2Alysa]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dyza</b></i>

I'm certainly not in denial. In the UK there are 7,500 PWCF. 5 babies with CF are born each week, and each week 3 PWCF die. I live and hope that Craig will have as long a life as possible, my only concern is that when he reaches his mid-20s, I will be into my mid-60s. And when he needs us the most, the chances of me being there to help him, well, are slim. In the meantime myself and the missus are learning as much as possible and hope to pass as much onto Craig, and his sister as we possible can.

Jump on this if you want, but what I just wrote was extremely difficult to write, as a parent you have such a different perspective.

Craig</end quote></div>

I can sympathize with what you are feeling. I had the same worry when our daughter was diagnosed back in November but our doctor was awesome and told us that about 20 years ago the life avg. life expectancy was under 12 and now it is in the mid to high 30's. They are making break-throughs in research every day and all any of us can do is hope that they make a huge one shortly.

I thought about aborting this child when I knew its diganoses but then how would we feel if 3 years down the road they came up with a cure. Or if I gto preg again and all my "kids" were CF diagnosed through amnio.

Just a thought but all we can do is hope and so far.... the research is going in the right direction.

 

[Mommy2Alysa]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dyza</b></i>

I'm certainly not in denial. In the UK there are 7,500 PWCF. 5 babies with CF are born each week, and each week 3 PWCF die. I live and hope that Craig will have as long a life as possible, my only concern is that when he reaches his mid-20s, I will be into my mid-60s. And when he needs us the most, the chances of me being there to help him, well, are slim. In the meantime myself and the missus are learning as much as possible and hope to pass as much onto Craig, and his sister as we possible can.

Jump on this if you want, but what I just wrote was extremely difficult to write, as a parent you have such a different perspective.

Craig</end quote></div>

I can sympathize with what you are feeling. I had the same worry when our daughter was diagnosed back in November but our doctor was awesome and told us that about 20 years ago the life avg. life expectancy was under 12 and now it is in the mid to high 30's. They are making break-throughs in research every day and all any of us can do is hope that they make a huge one shortly.

I thought about aborting this child when I knew its diganoses but then how would we feel if 3 years down the road they came up with a cure. Or if I gto preg again and all my "kids" were CF diagnosed through amnio.

Just a thought but all we can do is hope and so far.... the research is going in the right direction.

 

[Mommy2Alysa]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dyza</b></i>

I'm certainly not in denial. In the UK there are 7,500 PWCF. 5 babies with CF are born each week, and each week 3 PWCF die. I live and hope that Craig will have as long a life as possible, my only concern is that when he reaches his mid-20s, I will be into my mid-60s. And when he needs us the most, the chances of me being there to help him, well, are slim. In the meantime myself and the missus are learning as much as possible and hope to pass as much onto Craig, and his sister as we possible can.

Jump on this if you want, but what I just wrote was extremely difficult to write, as a parent you have such a different perspective.

Craig</end quote></div>

I can sympathize with what you are feeling. I had the same worry when our daughter was diagnosed back in November but our doctor was awesome and told us that about 20 years ago the life avg. life expectancy was under 12 and now it is in the mid to high 30's. They are making break-throughs in research every day and all any of us can do is hope that they make a huge one shortly.

I thought about aborting this child when I knew its diganoses but then how would we feel if 3 years down the road they came up with a cure. Or if I gto preg again and all my "kids" were CF diagnosed through amnio.

Just a thought but all we can do is hope and so far.... the research is going in the right direction.

 

[Lilith]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>concernedmom</b></i>

I just had to comment on this:

<div class="FTQUOTE"><begin quote>Of course, I have no idea why I'm even commenting because all of the "pro-lifers" will make excuses until their faces turn blue, despite facts, moral or otherwise... </end quote></div>

Pro-life/pro-choice has nothing to do with <i><b>this specific topic</b></i>. I'm pro-life. </end quote></div>

You misunderstood, that's why I put "pro-life" in quotations. I mean "pro-life" as in "pro-I'm gonna have another CF kid no matter what because a life is still a life, blah, blah, blah". Those are the types of people that get me riled, and I was referring to them. Not "pro-life" referring to abortion, etc.

 

[Lilith]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>concernedmom</b></i>

I just had to comment on this:

<div class="FTQUOTE"><begin quote>Of course, I have no idea why I'm even commenting because all of the "pro-lifers" will make excuses until their faces turn blue, despite facts, moral or otherwise... </end quote></div>

Pro-life/pro-choice has nothing to do with <i><b>this specific topic</b></i>. I'm pro-life. </end quote></div>

You misunderstood, that's why I put "pro-life" in quotations. I mean "pro-life" as in "pro-I'm gonna have another CF kid no matter what because a life is still a life, blah, blah, blah". Those are the types of people that get me riled, and I was referring to them. Not "pro-life" referring to abortion, etc.

 

[Lilith]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>concernedmom</b></i>

I just had to comment on this:

<div class="FTQUOTE"><begin quote>Of course, I have no idea why I'm even commenting because all of the "pro-lifers" will make excuses until their faces turn blue, despite facts, moral or otherwise... </end quote></div>

Pro-life/pro-choice has nothing to do with <i><b>this specific topic</b></i>. I'm pro-life. </end quote></div>

You misunderstood, that's why I put "pro-life" in quotations. I mean "pro-life" as in "pro-I'm gonna have another CF kid no matter what because a life is still a life, blah, blah, blah". Those are the types of people that get me riled, and I was referring to them. Not "pro-life" referring to abortion, etc.

 

[barbc888]

SKNoell,

I have 10 brothers and sisters, 2 of whom have passed away from CF -- one was 6 years older, the other 10 years older. After my brother passed away at 1 month of age -- this was in 1957 -- doctors, friends, family told my parents not to have more children, so as not to risk having another with CF. They listened, talked, agonized and decided that they would do what they had decided before they even got married: they vowed to take as many children as God would give them and love them no matter what. Believe me, I've been through a lot and have had many stressful, frustrating times, but being resentful towards my parents has never entered my mind. I'm not a particularly religious person, but I feel we are all put on this earth for a reason. If you are worried about another child resenting you for having CF, look at the other side of the coin -- maybe they'll appreciate you for giving them life and for loving them and supporting every aspect of their disease. That's just my opinion... I wish you good luck with your decision.

Barbara
40 w/CF & CFRD