Stats on People with CF and Carriers having Children with CF?

[anonymous]

Why create a worthwhile life that will be harder (you said so yourself) when you can use another option and create a life that may be CF-free or adopt a child that already exists and needs a home?

The reason is from two people having a desire to naturally have a child together. Are those people just evil? If it's between that or nothing, then creating a worthwhile life is better than creating no life at all, yes? Yes perhaps you could persuade them to adopt or do it differently, but if they say no, this is the only way we want to do it, like many would, is it so wrong? If it's between a child with CF or having no child at all, why would the child with CF be the wrong choice? Now if they agreed to IVF and chose the one with CF over the one without CF, I wouldn't support that choice. I am only supporting the choice when said parents ONLY want to do it naturally, thus their only choice would be no child or taking the risk.

-Agent X

 

[CFHockeyMom]

Let's take my two sons as examples. Born into the same family with all the same control factors. One has CF the other not. Do you not agree that my CF child has suffered more than my non-CF child?

What I am saying is that if you have the knowledge (i.e. both parents are carriers and or one is a carrier and the other is a CFer) and you choose to have a child, you are accepting the fact that the child will have CF thus suffer more than if they did not.

Yes, CFers live worthwhile and happy lives but those lives are significantly harder than if they didnt' have CF. Do you not agree?!

I truly hope that you never have to watch your child suffer or burry them and can continue to live in utopia. Some of us aren't afforded that luxury. It's very big of you to continue to espouse your opinions when obviously you have NO basis in our reality.

 

[Lilith]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> If you only said
"I wouldn't do it myself", that's different from someone
saying they think it's selfish and wrong for someone else to do
it.</end quote></div><br>
<br>
Once again, I stated that in my opinion, it is selfish.  I
<b>never</b> used the word wrong to my knowledge.  And I
<b>did</b> say that I wouldn't do it myself:<br>
<br>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lilith</b></i> IIf there was even a
5% chance that my kid would have CF, I would never have a
child.</end quote></div><br>
<br>
And, from the same post...<br>
<br>
<div class="FTQUOTE"><begin quote>To me, having a child and knowing the dangers (not only to the
child, but to yourself) is irresponsible...  Sorry for the
rant, don't mean to judge anyone, but that is my opinion as someone
with this disease.</end quote></div><br>
<br>
Hope that clears things up...

 

[anonymous]

CFHockeyMom, sparing their own feelings when choosing not to do it is not really a compelling argument. If so, why care if other parents do it if they're prepared to face it? What if a child with CF is put up for adoption? No one should adopt them because it might bring difficulties to their life? The discussion was the well-being of the child, not the parents. If the parents choose to take the risk then it's their own fault for bringing the difficulties into their lives and they need to accept their choice for what it is. Maybe they would regret it, but would the child regret the choice? I doubt it. Yes it's harder, but I'm not talking about a CF vs no CF choice, I'm talking about a risk of CF vs no child choice.

-Agent X

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
The reason is from two people having a desire to naturally have a child together. Are those people just evil? If it's between that or nothing, then creating a worthwhile life is better than creating no life at all, yes? Yes perhaps you could persuade them to adopt or do it differently, but if they say no, this is the only way we want to do it, like many would, is it so wrong? If it's between a child with CF or having no child at all, why would the child with CF be the wrong choice? Now if they agreed to IVF and chose the one with CF over the one without CF, I wouldn't support that choice. I am only supporting the choice when said parents ONLY want to do it naturally, thus their only choice would be no child or taking the risk.
-Agent X</end quote></div>

Okay, if we get into this, it's a different thing than I was previously thinking/arguing. This is where I hesitate to say what's okay and what's not, because it's a personal decision. Even though I support a side, it's still a personal decision.
<i>If a family has a 12 year old who's raped by her uncle and they don't support abortion... would I suggest it? Absolutely. If they didn't, I'd think it would be putting the child through an unnecessary ordeal (and I'll be honest, it would piss me off), but that's a personal decision, so whatever they go with is their own business.</i>
<b><u>I think</b></u> that people having a natural child (with say, the 50/50 risk of CF) because the choices they like are natural child or no child at all... should rethink having children. If those are the reasons they're doing it, they're not the right reasons. Having kids <i>shouldn't</i> have anything to do with "mommy's eyes" or "daddy's hair." A child is not something "I want I want!" like at the toy store, where you can pick colors. A child is another HUMAN BEING, and if you're having one, you need to do what is best for the child, and not what <i>you want</i>. But that's just how I feel, as I said.

 

[anonymous]

Maybe it is foolish, maybe it's unreasonable, but is it morally wrong? All I've argued is that no, it's not morally wrong. I wouldn't do it myself and I have no desire for a child of my own. I don't think it's really anymore selfish than anyone else having their own child. I would say that yes it's more selfish than adopting, but I would also say my parents were more selfish for having my two sisters and I rather than adopting. But I'm glad they were selfish.

-Agent X

 

[dcgal]

HI Julie- Thanks for the overview of the board, however I am not a
new to this site.  I have been reading and posting for about 4
yrs- I finally got myself a user name. Also, I mistyped earlier- my
husband died in 2002, not 2004.<br>
<br>
I can take the heat for heavens sakes, I was married to a CFer and
now I am a widow raising a child by myselI'm not thinned skin. This
is a place to express your opinion and that is what I did. You may
not agree with what I said and it may not be popular, but it is my
opinion.  I am not a sugar coater, I know what CF does.<br>
<br>
Take Care

 

[CFHockeyMom]

Okay, here are some qutoes from our friend Alan. We all knew him and we all "watched" him die from this terrible disease. Here are his thoughts...

<div class="FTQUOTE"><begin quote>I don't see why you should continue trying to "chance" a healthy child. You wouldn't play Russian roulette with your kid, if there was only a 1-in-6 chance of killing or injuring them, would you?</end quote></div>

<div class="FTQUOTE"><begin quote>My parents tried to "chance it" repeatedly. They left grave markers all over the world (1 in Russia, 1 in Italy and one here--two died in infancy, the last died at 6.) I'm the only one of their kids still living, and that could soon change. It drove them apart and eats at them to this day.</end quote></div>

<div class="FTQUOTE"><begin quote>CF is about as wicked as they come, so let's not pretend it's just a walk in the park or mundane "challenge." The sooner no kid has to deal with it, the better. </end quote></div>

Agent-x,

These are the thoughts of a young man with CF who's parents had several children with CF, all of whom are now deceased. You may be able to disregard the feelings of the CFers that are still alive and posting on this board but I challenge you to disregard the thoughts of a man that new every aspect of this horrible disease, including death - Alan posted up until the very end.

 

[Emily65Roses]

There's a little bit of "selfish" in almost anything you do. I think adoption is a fabulous option. Will I go with it? I don't know yet. If you have the money and want to do IVF/PGD (and let's even say surrogacy to cut out personal health) instead so you can have natural children, that's your business. It may be a little selfish, but hell, no harm done, really. I just don't see selfish to the point of risking a major health problem making any sense. If you want to be selfish and spend a lot of money to have a child instead of adopting, that's your business. If you want to be selfish to have a child whose life will be a lot harder instead of adopting, that's a different story. It's losing stuff yourself (money, among other things), vs. risking the health of that child.

They're still rather similar, but do you see the slight distinction I'm talking about? Again, this is just what I think. It's really my thought process put into words. *shrug*

 

[anonymous]

You know, I don't think it's a good thing to try to use those that have died to support an argument CFHockeyMom. I didn't know Alan and I have respect for those who are not still alive to give their own opinions, but whether Alan was alive to say that right now or quoted after death, it doesn't change anything I've said. We're all going to die, if I died tomorrow and my partner came on here and quoted me, would it suddenly change everyone's beliefs? No, I don't think so. Maybe Alan didn't think a CF life was worthwhile and happy, I don't know. If a family only will have a child naturally, for whatever reasons, maybe a religious one, or not have a child, which should they choose? This is why I ask about whether a life with CF is worthwhile. Disregard other options, if the choice is ONLY between a child with a 25-50% risk of CF and no child at all, is there really a wrong choice?

-Agent X

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Disregard other options, if the choice is ONLY between a child with a 25-50% risk of CF and no child at all, is there really a wrong choice?
-Agent X</end quote></div>

I think a big problem for a lot of us is that this is not true. There is not only natural maybe with CF child or NOTHING. There are several choices, and that's where a lot of us have trouble. I can see religious reasons (maybe) for no IVF, certainly no PGD, stuff like that. But what religion is against adoption? And why?

 

[CFHockeyMom]

I'm not "using" Alan to support an argument. I'm quoting him as a source. I'm sure you've quoted dead authors to support arguments before.

Whether Alan thought a life with CF was worthwhile or not raises a good point. So far, you've only debated with CFers that have thought their lives were worthwhile. How far would your argument go if you came across those CFers who thought their life wasn't worthwhile, because they are out there.

See that's the thing with this disease, it is so random and so different from person to person. Do you think it's worthwhile to have a CF child then burry them 10 years later? Did that child have a happy life? I think you are basing your entire argument on the median age of death, ~36. Please keep in mind many CFers are still dying before they finish high school.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

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

Disregard other options, if the choice is ONLY between a child with a 25-50% risk of CF and no child at all, is there really a wrong choice?

-Agent X</end quote></div>



I think a big problem for a lot of us is that this is not true. There is not only natural maybe with CF child or NOTHING. There are several choices, and that's where a lot of us have trouble. I can see religious reasons (maybe) for no IVF, certainly no PGD, stuff like that. But what religion is against adoption? And why?</end quote></div>

This is the natural child vs adoption argument which I don't really care to argue over. I would ask, why should anyone have children of their own when they can adopt, CF as a risk or not? Those children need families and homes too, they're just as important. So why did ALL of our parents have us rather than adopt? For whatever reason some just don't want to adopt, maybe they want to go through birth. I would say there is a natural and evolutionary basis for that but I'd rather not somehow steer this topic into a debate about evolution.

-Agent X

 

[anonymous]

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

I'm not "using" Alan to support an argument. I'm quoting him as a source. I'm sure you've quoted dead authors to support arguments before.



Whether Alan thought a life with CF was worthwhile or not raises a good point. So far, you've only debated with CFers that have thought their lives were worthwhile. How far would your argument go if you came across those CFers who thought their life wasn't worthwhile, because they are out there.



See that's the thing with this disease, it is so random and so different from person to person. Do you think it's worthwhile to have a CF child then burry them 10 years later? Did that child have a happy life? I think you are basing your entire argument on the median age of death, ~36. Please keep in mind many CFers are still dying before they finish high school.</end quote></div>

And that is the risk, no guarantees. There are risks for having a child at all, though certainly the risk of a CF child dying at 10 is much higher than a normal child. The reverse can happen though, what if they live to 60 and live a full life and only had very mild CF? If a big portion of CFers said their lives weren't worthwhile and they weren't happy, I would rethink my opinion, certainly. I just haven't seen that consensus, and it's not as if I can release a nationwide poll asking.

-Agent X

 

[Zoey7206]

wow  ive been reading this forum the past few days and this is
crazy  all of you seem to keep repeating yourselves
      CRAZY <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Emily65Roses]

X, that's where I bring this back into play:

<div class="FTQUOTE"><begin quote>If you have the money and want to do IVF/PGD (and let's even say surrogacy to cut out personal health) instead so you can have natural children, that's your business. It may be a little selfish, but hell, no harm done, really. I just don't see selfish to the point of risking a major health problem making any sense. If you want to be selfish and spend a lot of money to have a child instead of adopting, that's your business. If you want to be selfish to have a child whose life will be a lot harder instead of adopting, that's a different story. It's losing stuff yourself (money, among other things), vs. risking the health of that child.</end quote></div>

If you want to be selfish and have natural kids, that's fine. But why go so far as to be selfish to the point of risking the child's health, when you could use those other options? I understand selfish, I do not understand selfish when it coincides with what's best for the child. Yes, we could argue the selfishness of having a child for various reasons (war, disease, hated, blah etc), but we are currently arguing against selfishness of having a child with a high known risk of CF. And that's where what I said makes sense to me.

 

[Emily65Roses]

Hey Zoey, I know I'm repeating myself at this point... I was repeating myself like 2 hours ago lol... I just have nothing better to do until school starts again. Heh. It's keeping me entertained. *shrug* <img src="i/expressions/face-icon-small-cool.gif" border="0">

 

[anonymous]

It makes sense to me too, but I don't believe they are being cruel or morally wrong for bringing a child into their life with CF, because so many people with CF are wonderful people that live worthwhile and happy lives. Does it make sense to not adopt? Not to me, but so many things to me make little to no sense. When people say that same sex marriages are morally wrong, I just get bewildered. No I don't want to go off on that tangent, but some people just do what they do or believe what they believe for whatever reason and it may make no sense at all to some of us. What reasons are there against adopting? I don't know because I don't have any reasons against it. I could probably do a google search and find some crazed opinions on it. To choose to ignore a child without a family in order to have your own is very selfish to me whether CF is a risk or not, so clearly there must be a very strong desire to have one's own child, maybe it brings them greater happiness or a closer bond to their partner. I really don't know.

-Agent X

 

[Emily65Roses]

Gotcha. Well this is a good place for us to shakes hands and part... or something. Hahaha. You make some very good points, and are quite a worthy competitor. I sound like I'm being a smart@ss, which I am... but I'm being a sincere smart@ss. So there we are.

Now I actually have something to do. I have a friend coming over (holy crap, I've got a friend?!), and I need a shower. So g'day to you and everyone else!

 

[Lilith]

Ugh, as if I haven't wasted enough calories responding to a
redundant thread, but I'm going to throw this out anyway as my last
statement...<br>
<br>
Those who willingly choose to bring a child into this world with a
high risk of CF are no different than gamblers in Vegas.
 Sometimes you win big, and sometimes you lose everything.
 More often than not, you walk out with empty pockets.
 Some people lose every penny to their name.  The odds
are stacked against you that you'll lose, no matter how <i>much</i>
you lose.  But still those people gamble, even if everyone
watching thinks they're a fool for taking such a risk.<br>
<br>
Just like in Vegas, you have a much higher chance of losing than
winning.  If you want to take the risk, so be it.  But
don't be surprised when (if you lose) that child comes to you one
day and asks, "Why do I have CF?"  You can't very
well tell them that you had nothing to do with it.  So what
will you tell them?<br>
<br>
Food for thought...