To have more children (with possible CF) or not

[CFHockeyMom]

If adoption and IVF w/ PGD are too expensive then how do you propose to care for another CFer financially? The financial impact of CF can't be denied and it only increases as the CFer ages. Sure, maybe you have good health care now but that can change at the drop of a hat.

 

[CFHockeyMom]

If adoption and IVF w/ PGD are too expensive then how do you propose to care for another CFer financially? The financial impact of CF can't be denied and it only increases as the CFer ages. Sure, maybe you have good health care now but that can change at the drop of a hat.

 

[CFHockeyMom]

If adoption and IVF w/ PGD are too expensive then how do you propose to care for another CFer financially? The financial impact of CF can't be denied and it only increases as the CFer ages. Sure, maybe you have good health care now but that can change at the drop of a hat.

 

[Landy]

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

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?</end quote></div>

I had an older sister with CF and quite frankly, I never even thought twice about it until I read this post. It is what it is.
If you should have another CF child, possibly their reaction would be based on your attitude or reaction. If you seem very matter of fact about it instead of all stressed & apologetic to them, then they probably won't think twice about it either.

 

[Landy]

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

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?</end quote></div>

I had an older sister with CF and quite frankly, I never even thought twice about it until I read this post. It is what it is.
If you should have another CF child, possibly their reaction would be based on your attitude or reaction. If you seem very matter of fact about it instead of all stressed & apologetic to them, then they probably won't think twice about it either.

 

[Landy]

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

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?</end quote></div>

I had an older sister with CF and quite frankly, I never even thought twice about it until I read this post. It is what it is.
If you should have another CF child, possibly their reaction would be based on your attitude or reaction. If you seem very matter of fact about it instead of all stressed & apologetic to them, then they probably won't think twice about it either.

 

[shamrock]

I have given my opinion on topics like this one before and it never really changes.

I am one of four in my family, and I am the only one with CF. I am third. I was an eighties child and we didn't know how bad cf could get.

But CF is just a problem that us with it have to deal with. There are ALWAYS other ways around doing things. I have reached end-stage CF and have thankfully had a transplant which saved my life.

Yes it was hard at TIMES, but (here comes the sickenly cheesy bit) there is SO much that life can offer not to want to live. A lot of people get bogged down by the whole CF thing, they need to probably find other focuses in their life that can make them think positively. Sounds harsh, but its what I believe.

At the end of the day, its up to you if you want to risk it. Someone said that 'whats the point if they're going to die early'. So what if you do? Quality and not quantity. What if you had a 'normal' child who got cancer when they were young and died. Would you say 'what was the point in having him if he was going to die early'. Of course not. CF is the same.

 

[shamrock]

I have given my opinion on topics like this one before and it never really changes.

I am one of four in my family, and I am the only one with CF. I am third. I was an eighties child and we didn't know how bad cf could get.

But CF is just a problem that us with it have to deal with. There are ALWAYS other ways around doing things. I have reached end-stage CF and have thankfully had a transplant which saved my life.

Yes it was hard at TIMES, but (here comes the sickenly cheesy bit) there is SO much that life can offer not to want to live. A lot of people get bogged down by the whole CF thing, they need to probably find other focuses in their life that can make them think positively. Sounds harsh, but its what I believe.

At the end of the day, its up to you if you want to risk it. Someone said that 'whats the point if they're going to die early'. So what if you do? Quality and not quantity. What if you had a 'normal' child who got cancer when they were young and died. Would you say 'what was the point in having him if he was going to die early'. Of course not. CF is the same.

 

[shamrock]

I have given my opinion on topics like this one before and it never really changes.

I am one of four in my family, and I am the only one with CF. I am third. I was an eighties child and we didn't know how bad cf could get.

But CF is just a problem that us with it have to deal with. There are ALWAYS other ways around doing things. I have reached end-stage CF and have thankfully had a transplant which saved my life.

Yes it was hard at TIMES, but (here comes the sickenly cheesy bit) there is SO much that life can offer not to want to live. A lot of people get bogged down by the whole CF thing, they need to probably find other focuses in their life that can make them think positively. Sounds harsh, but its what I believe.

At the end of the day, its up to you if you want to risk it. Someone said that 'whats the point if they're going to die early'. So what if you do? Quality and not quantity. What if you had a 'normal' child who got cancer when they were young and died. Would you say 'what was the point in having him if he was going to die early'. Of course not. CF is the same.

 

[Emily65Roses]

You can't always prevent cancer. If you know you have CF genes, you can prevent CF. Same idea in sick lives, death, etc etc... not the same idea in how it comes about. If you have a CF child and then you have another, you know what you're doing. Cancer is usually much more random.

And again with the "not wanting to live" or "do you wish you weren't born" argument. It's not relevant here. It never is. People always brings it up and it makes me want to bash my head against the wall.
We are all alive, you can't ask us if we'd prefer to be dead. Most times, you're going to get a "no." Why? Because we're already lived 20, 30+ years. If we're talking about kids who don't yet exist... why not instead give a child a life that will have a better chance at good health? That way you still have a kid who's happy to be alive, a kid with a personality, a kid with friends, family, a sense of humor... And on top of that, they don't have to deal with CF crap. Maybe they get something else, but at least you won't be <b>knowingly</b> risking it.

 

[Emily65Roses]

You can't always prevent cancer. If you know you have CF genes, you can prevent CF. Same idea in sick lives, death, etc etc... not the same idea in how it comes about. If you have a CF child and then you have another, you know what you're doing. Cancer is usually much more random.

And again with the "not wanting to live" or "do you wish you weren't born" argument. It's not relevant here. It never is. People always brings it up and it makes me want to bash my head against the wall.
We are all alive, you can't ask us if we'd prefer to be dead. Most times, you're going to get a "no." Why? Because we're already lived 20, 30+ years. If we're talking about kids who don't yet exist... why not instead give a child a life that will have a better chance at good health? That way you still have a kid who's happy to be alive, a kid with a personality, a kid with friends, family, a sense of humor... And on top of that, they don't have to deal with CF crap. Maybe they get something else, but at least you won't be <b>knowingly</b> risking it.

 

[Emily65Roses]

You can't always prevent cancer. If you know you have CF genes, you can prevent CF. Same idea in sick lives, death, etc etc... not the same idea in how it comes about. If you have a CF child and then you have another, you know what you're doing. Cancer is usually much more random.

And again with the "not wanting to live" or "do you wish you weren't born" argument. It's not relevant here. It never is. People always brings it up and it makes me want to bash my head against the wall.
We are all alive, you can't ask us if we'd prefer to be dead. Most times, you're going to get a "no." Why? Because we're already lived 20, 30+ years. If we're talking about kids who don't yet exist... why not instead give a child a life that will have a better chance at good health? That way you still have a kid who's happy to be alive, a kid with a personality, a kid with friends, family, a sense of humor... And on top of that, they don't have to deal with CF crap. Maybe they get something else, but at least you won't be <b>knowingly</b> risking it.

 

[Emily65Roses]

Really what it comes down to... if you are willing to knowingly give a child such a heinous disease (and I know it's not the worst, there are plenty other ones that suck --- but it's not something you want to hand out to people on purpose), there are STILL things to consider.

<b>If you choose to ignore the moral argument, at least please look at these points:</b>

Are you ready to deal with possible cross-contamination? LouLou's example was PERFECT.

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

The kid get shipped off to the hospital because "well hell, he's got cepacia, he's screwed anyway" and they don't want to pass the cepacia along to kid # 2. What a CRAPPY way to die!!!! The kid in the hospital is alone and unwanted because they don't want to make the second kid sick. Let's say your kid gets cepacia. Wouldn't you want to be in the hospital with him, comforting him, instead of avoiding him to protect your other child??

And just because your child is healthy now, doesn't mean he always will be. Going on the "Well it's only 25% chance" and "Well his mutations are mild" are false comforts. They are not something you want to base this decision on. Because that can change in a split-second. Those are basically "we can do this because we're going to hope it'll go well" reasons. And while we all hope it goes well, you can't bet on it. You have to be ready for the unknown. So what if this child is mild? Let's say you have another, and they're in really bad health. They get sick and die when they're 15. Do you really want to deal with that? I doubt it.

Lastly, something I mentioned previously, and CFHockeyMom echoed:
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>
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.</end quote></div>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>
If adoption and IVF w/ PGD are too expensive then how do you propose to care for another CFer financially? The financial impact of CF can't be denied and it only increases as the CFer ages. Sure, maybe you have good health care now but that can change at the drop of a hat.</end quote></div>

<u>Ignore the moral argument, if you know your stand on it, and you're okay with risking another kid with CF. But do yourself a favor, and consider all of THAT first. Because that applies no matter your moral stand on it.</u>

 

[Emily65Roses]

Really what it comes down to... if you are willing to knowingly give a child such a heinous disease (and I know it's not the worst, there are plenty other ones that suck --- but it's not something you want to hand out to people on purpose), there are STILL things to consider.

<b>If you choose to ignore the moral argument, at least please look at these points:</b>

Are you ready to deal with possible cross-contamination? LouLou's example was PERFECT.

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

The kid get shipped off to the hospital because "well hell, he's got cepacia, he's screwed anyway" and they don't want to pass the cepacia along to kid # 2. What a CRAPPY way to die!!!! The kid in the hospital is alone and unwanted because they don't want to make the second kid sick. Let's say your kid gets cepacia. Wouldn't you want to be in the hospital with him, comforting him, instead of avoiding him to protect your other child??

And just because your child is healthy now, doesn't mean he always will be. Going on the "Well it's only 25% chance" and "Well his mutations are mild" are false comforts. They are not something you want to base this decision on. Because that can change in a split-second. Those are basically "we can do this because we're going to hope it'll go well" reasons. And while we all hope it goes well, you can't bet on it. You have to be ready for the unknown. So what if this child is mild? Let's say you have another, and they're in really bad health. They get sick and die when they're 15. Do you really want to deal with that? I doubt it.

Lastly, something I mentioned previously, and CFHockeyMom echoed:
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>
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.</end quote></div>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>
If adoption and IVF w/ PGD are too expensive then how do you propose to care for another CFer financially? The financial impact of CF can't be denied and it only increases as the CFer ages. Sure, maybe you have good health care now but that can change at the drop of a hat.</end quote></div>

<u>Ignore the moral argument, if you know your stand on it, and you're okay with risking another kid with CF. But do yourself a favor, and consider all of THAT first. Because that applies no matter your moral stand on it.</u>

 

[Emily65Roses]

Really what it comes down to... if you are willing to knowingly give a child such a heinous disease (and I know it's not the worst, there are plenty other ones that suck --- but it's not something you want to hand out to people on purpose), there are STILL things to consider.

<b>If you choose to ignore the moral argument, at least please look at these points:</b>

Are you ready to deal with possible cross-contamination? LouLou's example was PERFECT.

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

The kid get shipped off to the hospital because "well hell, he's got cepacia, he's screwed anyway" and they don't want to pass the cepacia along to kid # 2. What a CRAPPY way to die!!!! The kid in the hospital is alone and unwanted because they don't want to make the second kid sick. Let's say your kid gets cepacia. Wouldn't you want to be in the hospital with him, comforting him, instead of avoiding him to protect your other child??

And just because your child is healthy now, doesn't mean he always will be. Going on the "Well it's only 25% chance" and "Well his mutations are mild" are false comforts. They are not something you want to base this decision on. Because that can change in a split-second. Those are basically "we can do this because we're going to hope it'll go well" reasons. And while we all hope it goes well, you can't bet on it. You have to be ready for the unknown. So what if this child is mild? Let's say you have another, and they're in really bad health. They get sick and die when they're 15. Do you really want to deal with that? I doubt it.

Lastly, something I mentioned previously, and CFHockeyMom echoed:
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>
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.</end quote></div>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>
If adoption and IVF w/ PGD are too expensive then how do you propose to care for another CFer financially? The financial impact of CF can't be denied and it only increases as the CFer ages. Sure, maybe you have good health care now but that can change at the drop of a hat.</end quote></div>

<u>Ignore the moral argument, if you know your stand on it, and you're okay with risking another kid with CF. But do yourself a favor, and consider all of THAT first. Because that applies no matter your moral stand on it.</u>

 

[chrissyd]

<div class="FTQUOTE"><begin quote>I am a parent of a child with CF. I would never wish that on anyone. Do you think I wish my son was never born because he is sick and it might be tough on me. No, I love him and would not trade him for anything. I will be there with him to the end if necessary. His entire life is not about CF and it will never be. I will never let him pity himself. I have tons of friends who have children with problems. To be honest, my sons illness may cause death someday but would I not trade him for a child that has Downs or a severe case of Autism. At least he will live a very normal life. </end quote></div>

I was reading this thread, and as a person with a 'mild' case of CF <u>at this point in time</u>, I just wanted to say; that the last comment is <u>wrong</u>.
"At least he will lead a normal life"? I usually stay out of these discussions b/c its a hot topic...but I read that and was shocked. This shows how much about this disease that you understand. Knowing and understanding that knowledge are two different things.

Like I said I have a mild case, but my life has been far from "normal". If you do have more children, and no one can make that choice for you, I wish you luck. But please do yourself and you CF child(ren) a favor and make it a point to 'understand' CF better.

With my mild CF I still:
1. Use my vest 20 - 30 minutes twice a day. 3-4 times a day if I'm sick.
2. On a healthy day I still take atleast 8 pills in the morning, 4 in the afternoon,
and 8 before bed.
3. Am unable to participate in many activities with friends and family...
As a child I couldn't do a lot of what the other kids could do. And being a kid...I just didn't understand. Why was I different?

 

[chrissyd]

<div class="FTQUOTE"><begin quote>I am a parent of a child with CF. I would never wish that on anyone. Do you think I wish my son was never born because he is sick and it might be tough on me. No, I love him and would not trade him for anything. I will be there with him to the end if necessary. His entire life is not about CF and it will never be. I will never let him pity himself. I have tons of friends who have children with problems. To be honest, my sons illness may cause death someday but would I not trade him for a child that has Downs or a severe case of Autism. At least he will live a very normal life. </end quote></div>

I was reading this thread, and as a person with a 'mild' case of CF <u>at this point in time</u>, I just wanted to say; that the last comment is <u>wrong</u>.
"At least he will lead a normal life"? I usually stay out of these discussions b/c its a hot topic...but I read that and was shocked. This shows how much about this disease that you understand. Knowing and understanding that knowledge are two different things.

Like I said I have a mild case, but my life has been far from "normal". If you do have more children, and no one can make that choice for you, I wish you luck. But please do yourself and you CF child(ren) a favor and make it a point to 'understand' CF better.

With my mild CF I still:
1. Use my vest 20 - 30 minutes twice a day. 3-4 times a day if I'm sick.
2. On a healthy day I still take atleast 8 pills in the morning, 4 in the afternoon,
and 8 before bed.
3. Am unable to participate in many activities with friends and family...
As a child I couldn't do a lot of what the other kids could do. And being a kid...I just didn't understand. Why was I different?

 

[chrissyd]

<div class="FTQUOTE"><begin quote>I am a parent of a child with CF. I would never wish that on anyone. Do you think I wish my son was never born because he is sick and it might be tough on me. No, I love him and would not trade him for anything. I will be there with him to the end if necessary. His entire life is not about CF and it will never be. I will never let him pity himself. I have tons of friends who have children with problems. To be honest, my sons illness may cause death someday but would I not trade him for a child that has Downs or a severe case of Autism. At least he will live a very normal life. </end quote></div>

I was reading this thread, and as a person with a 'mild' case of CF <u>at this point in time</u>, I just wanted to say; that the last comment is <u>wrong</u>.
"At least he will lead a normal life"? I usually stay out of these discussions b/c its a hot topic...but I read that and was shocked. This shows how much about this disease that you understand. Knowing and understanding that knowledge are two different things.

Like I said I have a mild case, but my life has been far from "normal". If you do have more children, and no one can make that choice for you, I wish you luck. But please do yourself and you CF child(ren) a favor and make it a point to 'understand' CF better.

With my mild CF I still:
1. Use my vest 20 - 30 minutes twice a day. 3-4 times a day if I'm sick.
2. On a healthy day I still take atleast 8 pills in the morning, 4 in the afternoon,
and 8 before bed.
3. Am unable to participate in many activities with friends and family...
As a child I couldn't do a lot of what the other kids could do. And being a kid...I just didn't understand. Why was I different?

 

[shamrock]

Chrissyd,

Do you not feel with your cf that you know no other norm? You say you didn't have a normal childhood, and you don't have a 'normal' life now. You take a bazillion tablets, physio yadda yadda. My regime was the same, but apart from stays in hospital (and perhaps in my naievity) I always considered myself to be 'normal'. My cf never really held me back apart from a handful of occasions.

Perhaps you are very sick but I don't understand why you are unable to particiapte so much with your friends/family. What is holding you back? I hope I don't come off too judgemental, I'm just curious.

Emily,
I take your point about cancer/genetic thing. I was simply commenting on the person who said 'what's the point if you're going to die early' comment, which I felt was ridiculous, as to me length of life has nothing to do with how you live your life.

 

[shamrock]

Chrissyd,

Do you not feel with your cf that you know no other norm? You say you didn't have a normal childhood, and you don't have a 'normal' life now. You take a bazillion tablets, physio yadda yadda. My regime was the same, but apart from stays in hospital (and perhaps in my naievity) I always considered myself to be 'normal'. My cf never really held me back apart from a handful of occasions.

Perhaps you are very sick but I don't understand why you are unable to particiapte so much with your friends/family. What is holding you back? I hope I don't come off too judgemental, I'm just curious.

Emily,
I take your point about cancer/genetic thing. I was simply commenting on the person who said 'what's the point if you're going to die early' comment, which I felt was ridiculous, as to me length of life has nothing to do with how you live your life.