To have more children (with possible CF) or not

[blondelawyer]

I don't think that most of these posts are showing the "spite" in people--they are just giving honest opinions. I know that is what I did. Like some of the others, I didn't see that you were looking for opinions only from adults with CF whose parents knew it was a possibility before they were born. I was thinking that you wanted honest opinions of people who are in different positions. I do not consider my comments to be spiteful in any sense.

This is a very controversial topic (see the post in the Adults with CF thread about people with having CF having children), as I am sure you knew. People are going to have different views, and some are going to have very strong views. Recognize that people are going to disagree on this.

In "defense" of some of the harsher comments, I don't think that he (wannastayanonymous) was saying the a CF life is rubbish--just that the disease is really difficult to live with in so many different ways and thus it would be difficult to knowingly put someone else in that position--which I think is a valid point.

As many people have said, this is obviously a personal choice and it is good that you are thinking about it and making a conscious choice. Best wishes!


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

Thanks to those that are supportive. I have spoken to his doctors. My son has 2 very rare, MILD strains so the long term effects are not the norm. If he was 508 or another more serious strain, I would never even consider it.



Yes the future is always unclear but that is for everything. I do want alot of kids that can also be there to support each other.



My husband is the one that is more unsure with the whole thing.



Thanks again. I thought reaching out on this forum would be helpful but it just shows me the spite in people instead.</end quote></div>

 

[wannastayanonymous]

Hey all, sorry for my rookie posting techniques. I am not the smartest tack, and didn't know I posted twice due to the refresh taking you back to the first page of posts.

 

[wannastayanonymous]

Hey all, sorry for my rookie posting techniques. I am not the smartest tack, and didn't know I posted twice due to the refresh taking you back to the first page of posts.

 

[wannastayanonymous]

Hey all, sorry for my rookie posting techniques. I am not the smartest tack, and didn't know I posted twice due to the refresh taking you back to the first page of posts.

 

[Chaggie]

Why on Earth would you want to take a 25% chance of giving a child a life with an incurable disease that will most likely shorten their life and lessen thier quality of life.. I'm sorry but I just can not grasp the logic behind that.

 

[Chaggie]

Why on Earth would you want to take a 25% chance of giving a child a life with an incurable disease that will most likely shorten their life and lessen thier quality of life.. I'm sorry but I just can not grasp the logic behind that.

 

[Chaggie]

Why on Earth would you want to take a 25% chance of giving a child a life with an incurable disease that will most likely shorten their life and lessen thier quality of life.. I'm sorry but I just can not grasp the logic behind that.

 

[Scarlett81]

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


This isn't a matter of opinion. It isn't a matter of belief. It is a matter of being honest with her approach to this, and what the actual conscious decision she is making, knowing the facts. This IS a black and white issue, and I can say I believe there are VERY few of those in life.</end quote></div>

Thats where you are completely wrong. This is about, A. Her as a parent. B. Her and her spouse. C. Her family and what is best for them.
I'm not saying either way what is best for them (obviously I have already mentioned my personal stance on this issue, so duh...I wouldn't do it), but do you know this person or her spouse? Do you know what their family dynamic is like? Have you sat and interviewed every Cfer and heard them say they wish they were never born and their lives are waste and ONLY about cf and nothing else???!!!?? Bc I don't recall ever feeling like that in life. And I know there are lots of Cfers on this site that would agree.
You have an opinion on this and I respect that opinion. But don't act like your opnion is the black and white will of God. Bc its not-Its an opinion!!!! One of many. So have yours and talk about it, afterall this woman did ask for opinion-S on this in the opening of her thread.
But (sigh) please for Gods sake don't act like you are all moral and all right for thinking this way and anyone else that disagrees is evil and cruel -bc people that speak this way only chase off other people that come here looking for support. Like this thread probably just did to the original poster.
Thats all.
Carry on in peace <b>one and all</b>.

 

[Scarlett81]

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


This isn't a matter of opinion. It isn't a matter of belief. It is a matter of being honest with her approach to this, and what the actual conscious decision she is making, knowing the facts. This IS a black and white issue, and I can say I believe there are VERY few of those in life.</end quote></div>

Thats where you are completely wrong. This is about, A. Her as a parent. B. Her and her spouse. C. Her family and what is best for them.
I'm not saying either way what is best for them (obviously I have already mentioned my personal stance on this issue, so duh...I wouldn't do it), but do you know this person or her spouse? Do you know what their family dynamic is like? Have you sat and interviewed every Cfer and heard them say they wish they were never born and their lives are waste and ONLY about cf and nothing else???!!!?? Bc I don't recall ever feeling like that in life. And I know there are lots of Cfers on this site that would agree.
You have an opinion on this and I respect that opinion. But don't act like your opnion is the black and white will of God. Bc its not-Its an opinion!!!! One of many. So have yours and talk about it, afterall this woman did ask for opinion-S on this in the opening of her thread.
But (sigh) please for Gods sake don't act like you are all moral and all right for thinking this way and anyone else that disagrees is evil and cruel -bc people that speak this way only chase off other people that come here looking for support. Like this thread probably just did to the original poster.
Thats all.
Carry on in peace <b>one and all</b>.

 

[Scarlett81]

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


This isn't a matter of opinion. It isn't a matter of belief. It is a matter of being honest with her approach to this, and what the actual conscious decision she is making, knowing the facts. This IS a black and white issue, and I can say I believe there are VERY few of those in life.</end quote></div>

Thats where you are completely wrong. This is about, A. Her as a parent. B. Her and her spouse. C. Her family and what is best for them.
I'm not saying either way what is best for them (obviously I have already mentioned my personal stance on this issue, so duh...I wouldn't do it), but do you know this person or her spouse? Do you know what their family dynamic is like? Have you sat and interviewed every Cfer and heard them say they wish they were never born and their lives are waste and ONLY about cf and nothing else???!!!?? Bc I don't recall ever feeling like that in life. And I know there are lots of Cfers on this site that would agree.
You have an opinion on this and I respect that opinion. But don't act like your opnion is the black and white will of God. Bc its not-Its an opinion!!!! One of many. So have yours and talk about it, afterall this woman did ask for opinion-S on this in the opening of her thread.
But (sigh) please for Gods sake don't act like you are all moral and all right for thinking this way and anyone else that disagrees is evil and cruel -bc people that speak this way only chase off other people that come here looking for support. Like this thread probably just did to the original poster.
Thats all.
Carry on in peace <b>one and all</b>.

 

[kybert]

your situation is the exact same as my parents when they were deciding to have me. 1 child w/cf 1 w/o. you also sound just like my parents at the time. "but the child i have now is soooo healthy" "cf is no big deal! we can handle it" "its only a 25% chance" "its not like it can get THAT bad". give me a bucket someone? their eldest child ended up dying at age 14. now thats some mild disease right there huh! sure must be fun to watch their son die and will then have to watch me die in the future. how do i feel about their decision to have me? i think they are idiots. even they think they are idiots. now thats saying something. quote "if we knew what we know now about cf we would have never have had you". and as for love and support conquering all? please. love and support doesnt make me feel better when i cant breathe, when im in pain, when im puking, when i have to have surgery and the list goes on.

i seem to meet your criteria of who can post, so if you still dont like it, tough titties.

 

[kybert]

your situation is the exact same as my parents when they were deciding to have me. 1 child w/cf 1 w/o. you also sound just like my parents at the time. "but the child i have now is soooo healthy" "cf is no big deal! we can handle it" "its only a 25% chance" "its not like it can get THAT bad". give me a bucket someone? their eldest child ended up dying at age 14. now thats some mild disease right there huh! sure must be fun to watch their son die and will then have to watch me die in the future. how do i feel about their decision to have me? i think they are idiots. even they think they are idiots. now thats saying something. quote "if we knew what we know now about cf we would have never have had you". and as for love and support conquering all? please. love and support doesnt make me feel better when i cant breathe, when im in pain, when im puking, when i have to have surgery and the list goes on.

i seem to meet your criteria of who can post, so if you still dont like it, tough titties.

 

[kybert]

your situation is the exact same as my parents when they were deciding to have me. 1 child w/cf 1 w/o. you also sound just like my parents at the time. "but the child i have now is soooo healthy" "cf is no big deal! we can handle it" "its only a 25% chance" "its not like it can get THAT bad". give me a bucket someone? their eldest child ended up dying at age 14. now thats some mild disease right there huh! sure must be fun to watch their son die and will then have to watch me die in the future. how do i feel about their decision to have me? i think they are idiots. even they think they are idiots. now thats saying something. quote "if we knew what we know now about cf we would have never have had you". and as for love and support conquering all? please. love and support doesnt make me feel better when i cant breathe, when im in pain, when im puking, when i have to have surgery and the list goes on.

i seem to meet your criteria of who can post, so if you still dont like it, tough titties.

 

[katyf13]

I think sometimes it is helpful to think of it outside of the box... would you have a child knowing there was a 25% chance of having:
sickle cell anemia?
leukemia (yes, I know it's not genetic, I'm using an example, hypothetical)
Cf is something we are familiar with so I think sometimes we feel like we have it under control. It is not. There have been families who have lost 4 children to cf. If you want to have a big family, that is wonderful!!! There are many ways to do it! It's not a light decision. And this is not the place where a bunch of people will validate it. We have all been hurt by it.
This is not spite.

 

[katyf13]

I think sometimes it is helpful to think of it outside of the box... would you have a child knowing there was a 25% chance of having:
sickle cell anemia?
leukemia (yes, I know it's not genetic, I'm using an example, hypothetical)
Cf is something we are familiar with so I think sometimes we feel like we have it under control. It is not. There have been families who have lost 4 children to cf. If you want to have a big family, that is wonderful!!! There are many ways to do it! It's not a light decision. And this is not the place where a bunch of people will validate it. We have all been hurt by it.
This is not spite.

 

[katyf13]

I think sometimes it is helpful to think of it outside of the box... would you have a child knowing there was a 25% chance of having:
sickle cell anemia?
leukemia (yes, I know it's not genetic, I'm using an example, hypothetical)
Cf is something we are familiar with so I think sometimes we feel like we have it under control. It is not. There have been families who have lost 4 children to cf. If you want to have a big family, that is wonderful!!! There are many ways to do it! It's not a light decision. And this is not the place where a bunch of people will validate it. We have all been hurt by it.
This is not spite.

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sknoell</b></i>
No, I did not only listen to what Tess said because she said what I wanted to hear. I was just frustrated because the first few people who responded did not answer the question that I originally posted or were they the demographic I was polling, per say. They were just quick to judge just like you did.</end quote></div>
I hope you aren't talking about me. I didn't judge, I gave my opinion. I gave the opinion that you asked for, I might add. If you only want one type of response, I don't suggest asking another question here. You will get a wide variety of different responses to any given question.

On top of that, I am the older of two children. I have CF, my younger sister does not. My parents didn't "decide" to have my sister. They were trying to figure out what they wanted to do when my mom found out she was pregnant. Luckily, my sister doesn't even carry CF (and they decided to stop after her, even though my dad wanted boys). But let me clarify something. This was back in 1984-1987. They didn't even identify the CF gene until 1989. YOU have the tools and knowledge to make a good decision. My parents did what they did, and they're awesome, very good people. But they didn't have all the stuff at their disposal that you do today.



<div class="FTQUOTE"><begin quote>Seemed like everyone here is more interested in chastizing people and being nasty then providing answers to questions.</end quote></div>
Again, I hope this isn't pointed at me.

<div class="FTQUOTE"><begin quote>At least he will live a very normal life.</end quote></div>
"Very" normal life is a matter of opinion. I live a good life, I'm glad my parents had me (but if they had known the situation and chosen to adopt, I'd be proud of their decision - ignoring the obvious fact that I wouldn't be alive to be proud). But I do not live a "normal" life. And I will live a less "normal" life as time goes on. It is, unfortunately, the reality of CF. The "Do you wish you weren't born?" question is 100% useless in this situation and here's why: We are already all alive. Many of us have been living 20, 30, 40+ years. In your case, we are discussing hypothetical not as of yet conceived children. That question therefore stands irrelevant, because you can't ask a person that doesn't exist if they wish they hadn't been born.

Another point... isn't CF more expensive in the long run than saving up to adopt or to pay for IVF/PGD? I would be very willing to bet that it is. So if you're worried about money, I say save for a year or two, and then go an alternate route. You may make a onetime payment out the @ss for IVF or adoption... but you won't pay out the @ss for CF meds/food/therapies/hospitals/doctors/gas to clinics (that are often far)/therapy, etc etc etc for their whole life.

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sknoell</b></i>
No, I did not only listen to what Tess said because she said what I wanted to hear. I was just frustrated because the first few people who responded did not answer the question that I originally posted or were they the demographic I was polling, per say. They were just quick to judge just like you did.</end quote></div>
I hope you aren't talking about me. I didn't judge, I gave my opinion. I gave the opinion that you asked for, I might add. If you only want one type of response, I don't suggest asking another question here. You will get a wide variety of different responses to any given question.

On top of that, I am the older of two children. I have CF, my younger sister does not. My parents didn't "decide" to have my sister. They were trying to figure out what they wanted to do when my mom found out she was pregnant. Luckily, my sister doesn't even carry CF (and they decided to stop after her, even though my dad wanted boys). But let me clarify something. This was back in 1984-1987. They didn't even identify the CF gene until 1989. YOU have the tools and knowledge to make a good decision. My parents did what they did, and they're awesome, very good people. But they didn't have all the stuff at their disposal that you do today.



<div class="FTQUOTE"><begin quote>Seemed like everyone here is more interested in chastizing people and being nasty then providing answers to questions.</end quote></div>
Again, I hope this isn't pointed at me.

<div class="FTQUOTE"><begin quote>At least he will live a very normal life.</end quote></div>
"Very" normal life is a matter of opinion. I live a good life, I'm glad my parents had me (but if they had known the situation and chosen to adopt, I'd be proud of their decision - ignoring the obvious fact that I wouldn't be alive to be proud). But I do not live a "normal" life. And I will live a less "normal" life as time goes on. It is, unfortunately, the reality of CF. The "Do you wish you weren't born?" question is 100% useless in this situation and here's why: We are already all alive. Many of us have been living 20, 30, 40+ years. In your case, we are discussing hypothetical not as of yet conceived children. That question therefore stands irrelevant, because you can't ask a person that doesn't exist if they wish they hadn't been born.

Another point... isn't CF more expensive in the long run than saving up to adopt or to pay for IVF/PGD? I would be very willing to bet that it is. So if you're worried about money, I say save for a year or two, and then go an alternate route. You may make a onetime payment out the @ss for IVF or adoption... but you won't pay out the @ss for CF meds/food/therapies/hospitals/doctors/gas to clinics (that are often far)/therapy, etc etc etc for their whole life.

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sknoell</b></i>
No, I did not only listen to what Tess said because she said what I wanted to hear. I was just frustrated because the first few people who responded did not answer the question that I originally posted or were they the demographic I was polling, per say. They were just quick to judge just like you did.</end quote></div>
I hope you aren't talking about me. I didn't judge, I gave my opinion. I gave the opinion that you asked for, I might add. If you only want one type of response, I don't suggest asking another question here. You will get a wide variety of different responses to any given question.

On top of that, I am the older of two children. I have CF, my younger sister does not. My parents didn't "decide" to have my sister. They were trying to figure out what they wanted to do when my mom found out she was pregnant. Luckily, my sister doesn't even carry CF (and they decided to stop after her, even though my dad wanted boys). But let me clarify something. This was back in 1984-1987. They didn't even identify the CF gene until 1989. YOU have the tools and knowledge to make a good decision. My parents did what they did, and they're awesome, very good people. But they didn't have all the stuff at their disposal that you do today.



<div class="FTQUOTE"><begin quote>Seemed like everyone here is more interested in chastizing people and being nasty then providing answers to questions.</end quote></div>
Again, I hope this isn't pointed at me.

<div class="FTQUOTE"><begin quote>At least he will live a very normal life.</end quote></div>
"Very" normal life is a matter of opinion. I live a good life, I'm glad my parents had me (but if they had known the situation and chosen to adopt, I'd be proud of their decision - ignoring the obvious fact that I wouldn't be alive to be proud). But I do not live a "normal" life. And I will live a less "normal" life as time goes on. It is, unfortunately, the reality of CF. The "Do you wish you weren't born?" question is 100% useless in this situation and here's why: We are already all alive. Many of us have been living 20, 30, 40+ years. In your case, we are discussing hypothetical not as of yet conceived children. That question therefore stands irrelevant, because you can't ask a person that doesn't exist if they wish they hadn't been born.

Another point... isn't CF more expensive in the long run than saving up to adopt or to pay for IVF/PGD? I would be very willing to bet that it is. So if you're worried about money, I say save for a year or two, and then go an alternate route. You may make a onetime payment out the @ss for IVF or adoption... but you won't pay out the @ss for CF meds/food/therapies/hospitals/doctors/gas to clinics (that are often far)/therapy, etc etc etc for their whole life.

 

[LouLou]

I'm a 28 year old female with cf who is doing very well. My mom quite her career and made me her full time job. I will forever be indebted to her and appreciative. They did not have any children after my diagnosis. I feel that I wouldn't have been happy with their decision to have additional children had they chosen that route. I love my older brother but I love life more. He does not have cf.

The medical community is just at the beginnings of figuring out cross contamination. If your next child had cf they would expose eachother to dangerous germs...many of which might not even be known about yet.

Ponder this example I heard recently from a friend that works at CHOP (Children's Hosp. of Philadelphia). I hope the parents of this teen aren't on this site to read this but if they are I'm so so sorry you are having to deal not only with cf but also of protecting one child from the other. No one should ever have to endure this type of pain.

A teen is repeatedly admitted to CHOP because his lungs were rapidly declining from a cepacia infection. He was on the mend but it was clear to CHOP workers that the family really wanted him to stay at the hospital as much as possible because at home was another cf child who did not colonize this vicious form of cepacia. I never heard the end of the story but I think it's so sad that (s)he may have died in this 'unwanted' state. And how horrible the parents must feel. And the other child...what guilt to live with. Thinking about this makes me want to vomit.

I hope you make a decision that you will never regret. Good luck!