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

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NoExcuses

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

It's interesting to me that just last week a 20yr old, unwed, CFer announces her pregnancy and we're all grins and giggles. Now this week we're chastising a 24 year old CFer that's doing a little introspection and planning.



I love this place <img src="i/expressions/face-icon-small-happy.gif" border="0"></end quote></div>

i think it was a totaly different set of people who are commenting in each thread.
 
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anonymous

New member
Yep, totally different people.

And, there is a difference between wishing someone well with an event that has already occured (even if you don't agree with it), and trying to help someone make an educated decision.
 
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Chaggie

New member
You just gotta love message boards, the first thing I learned when
I started posting on boards, take nothing personally and get a
thick skin.
 
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CFHockeyMom

New member
I wouldn't say they are "totally" different people but I get your point. Before the recent anouncement, I do think that particular person had posted before about wanting to get pregnant and everyone stayed pretty quiet.

Anyway, it's neither here nor there. I wasn't criticizing anyone, just pointing out one of the many reasons I love this place. It really is like family. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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CFHockeyMom

New member
Chantel,

Back to your original question...

<div class="FTQUOTE"><begin quote>Has anyone with CF conceived with a Carrier and had a child with CF?</end quote></div>

I don't think I've ever seen anyone on here with that set of circumstances. Maybe some of the more seasoned veterans have though?
 
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JazzysMom

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

Chantel,



Back to your original question...



<div class="FTQUOTE"><begin quote>Has anyone with CF conceived with a Carrier and had a child with CF?</end quote></div>



I don't think I've ever seen anyone on here with that set of circumstances. Maybe some of the more seasoned veterans have though?</end quote></div>


On another forum there is a woman who is a widow of a man with CF & they have a son with CF. In my mind I am thinking the woman herself has CF also, but if thats true than her daughter should also have CF. I know at least that she is a carrier if not actually a CFer & her husband passed after having a lung tx for CF & they do have a son with CF.
 
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anonymous

New member
One thing to consider (this was brought up in a previous post) is cross contamination. You need to really think about this before knowing adding (or knowing there is a great possiblity of adding) a 2nd CFer into the family. Especially when it involves parent/child cfers. Bringing an infant into a home with someone that is colonized with PA and other CF bugs will be exposed and likely (JMO) colonize these bugs quicker than if they were born to a household without a CFer. This puts the infant at serious risk in the long term. So as mentioned earlier, make sure you are thinking of your childrens needs, not just your desires....that's what being a parent is all about.
 
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dramamama

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i> <div class="FTQUOTE"><begin quote><i>Originally
posted by: On another forum there is a woman who is a widow of a
man with CF & they have a son with CF. In my mind I am thinking
the woman herself has CF also, but if thats true than her daughter
should also have CF. I know at least that she is a carrier if not
actually a CFer & her husband passed after having a lung tx for
CF & they do have a son with CF.</end quote></div><br>
<br>
<br>
Actually, that lady does have cf and her son has cf......her
daughter does not have cf but a different lung disease.  Also,
Richard, her husband who died after transplant, was not the father
of either child.   She met him much later in life....and
married him, buried him and still loves him to this day.
 
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JazzysMom

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

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i> <div class="FTQUOTE"><begin quote><i>Originally
posted by: On another forum there is a woman who is a widow of a
man with CF & they have a son with CF. In my mind I am thinking
the woman herself has CF also, but if thats true than her daughter
should also have CF. I know at least that she is a carrier if not
actually a CFer & her husband passed after having a lung tx for
CF & they do have a son with CF.</end quote></div>





Actually, that lady does have cf and her son has cf......her
daughter does not have cf but a different lung disease.  Also,
Richard, her husband who died after transplant, was not the father
of either child.   She met him much later in life....and
married him, buried him and still loves him to this day.</end quote></div>

I am glad that you knew who I was referring to. I couldnt remember names. I didnt realize that he wasnt the father of the kids tho. Thanks for clarifying!
 
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anonymous

New member
CF IS a terrible disease but it does not make a person's life terrible. If CF can make someone a better and stronger person then it even has its upsides. Its terribleness is snatching lives away too soon and that isn't always a guarantee. If someone is just as happy as others and feels their life has just as much meaning, then that proves someone can live a fulfilling life with CF. Maybe people in poverty shouldn't have kids on purpose because it's statistically proven those in poverty have a much harder time gaining wealth than those that aren't. But someone could say "but they can get out of poverty!" yes but the chance is low and often has luck involved, much like CF where some live to old ages. People in poverty also have shorter lifespans. People can be happy in poverty, just like people can be happy with CF. Personally I would rather live a comfortable life with CF than be born into poverty and have to work two jobs just to get by. Maybe that's just me. And I would never suggest for people in poverty not to have a kid.

People say that you should have the child's interests in mind and not your own. If anyone with CF admits their life has just as much meaning and just as much happiness, how can they argue against having children with CF? If they are even proud of it, it makes no sense to me. "Yes my life is just as good as others, but don't add this conflict into others.", I don't get it. It only makes sense when people constantly compare their lives to the average and decide whether it's "good" or easy enough based on average lifespans and average difficulties. To me that begins to lead down to a decadent view of life in general. Easiest is best, right?
 
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Lilith

New member
To the anon at 3:35,<br>
<br>
Apparently CF is just a wonderful thing, isn't it?  I mean,
just because the child will have to deal with countless
sugeries, eventually lugging around an oxygen tank, mental
instability because of depression/anger, feeling like you are a
burden to all those around you because you have to depend on them,
having every type of tubing imaginable stuck in you at some point
(especially central lines and chest tubes, because I'm SO looking
forward to those!), not being able to keep up with friends/family
because of fatigue, waking up feeling like someone's choking you
every morning because mucus is clogged up in every breathing
orifice possible, and that's assuming you can sleep at all without
it dripping in your throat all night, eventually facing the
transplant choice and all that entails...all that has absolutely no
baring on quality of life.  None at all.<br>
<br>
Don't get me wrong, I have a wonderful family and I boyfriend that
loves me.  I don't want to run out and put a gun to my head.
   But I can tell you now that my family and lover are
the only reasons I am alive.  If I didn't have them, I would
have ended it long ago.  I GOT LUCKY in having a family that
cares so much.  Compare CF to whatever you like, nothing will
top it.  NOTHING.  Not even poverty.<br>
<br>
And just FYI, most people with CF are in poverty, too, because they
can't work and the government gives them little more than a spit
drop to live off of each month.  Just thought I'd let you
know...  Sorry to sound harsh, but I've come to the breaking
point with people who downplay this disease like its the common
cold.
 
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anonymous

New member
I think its important to remember that CF effects everyone differently.

Chantel is only asking a question to find out a fact not get everyone's opinions, especially the opinions of people that don't even have CF!

Chantel,

I have CF and I am trying to get pregnant, my husband has tested negaitve however we talked about both scenarios. Do your research. You will figure out what is best for you.
 
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CFHockeyMom

New member
Yet again, this has gone off topic.

Poverty to CF? Seems a bit of apples and oranges to me. After all, it is possible to work your way out of poverty. It is not possible to get away from CF.

Let's not talk life spans. I know you can come up with people that beat the odds but the fact is most parents burry their CF children which is not the norm for the rest of the population.

For any pregnancy there is risk. Life is risk. We all know that and no one is arguing that. However, being able to put a number to the risk (like 25% for CF carriers or 50% for a CFer and a carrier) is magnitudes higher than the risk couples without recessive/dominant gene mutations face. What people are suggesting here is that if you have the knowledge and could prevent suffering/pain, you should. Unless we are talking about the mildest cases of CF, there is suffering/pain and many feel it negligent to take that risk.

As recently as last year, I was on the fence regarding this issue. I really felt that if the prospective parents truley asessed their situation (financially, dynamically, emotionally, spiritually, etc...) and felt that they could handle a child with CF then they should go for it. I've fallen off the fence. Sean is 10 and even though I love him more than life, his life is hard. Harder than it would be if he didn't have CF. He's 10 for cryin' out loud. His life shouldn't be hard. His brother's isn't so why should his be. My heart breaks when I have to call him in from playing with his friends so he can do his treatments. My heart breaks that he has to go to the school office before every meal or snack for his enzymes. My heart breaks that he got cut from his hockey team for being too small. You didn't clarify if you were a CFer or a parent of a CFer but have you had to pin your child down while they were screaming "No Mom, No!!!!" so a nurse could put in yet another IV because his veins are so small that IV's rarely last more than a day? There's more but you get the idea. It doesn't mean his life is bad and it doesn't mean that someone out there doesn't have it harder but why, why would anyone choose this for their child?

My mother was born with a birth defect. It's small but it has affected her life. I never really gave it much thought but when this topic came up last year, I started thinking about it. My mom never knew if the defect was genetic or not and yet she took a chance and had my brother and I. When I started thinking about it in those terms, I was a little ticked that she gambled. Sure it all turned out ok, but I'd be really resentlful if the defect had been passed onto my brother or I.

There are options like adoption or IVF/PGD so people can still enjoy all the normal challenges of parenting. To knowingly add CF to that mix is, in my newly formed opinion, selfish; not right or wrong, just selfish.
 
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anonymous

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

Chantel is only asking a question to find out a fact not get everyone's opinions, especially the opinions of people that don't even have CF!

</end quote></div>

So a CF spouse can't have an opinion on this? After all, I be the one burying a spouse, and possibly a child. Just because you don't agree with someones opinion doesn't give you a right to say they can't voice their opinion~CF or not!
 
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Lilith

New member
How exactly are you voicing your opinion when there's no
name behind it?  I believe Claudette was referring to the
same anon as I was, therefore it wasn't even directed at you.
 That anon never said if they have CF or not.  'Course, I
don't know if that's you or not because all these anons DON'T LEAVE
A NAME!!
 
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anonymous

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

One thing to consider (this was brought up in a previous post) is cross contamination. You need to really think about this before knowing adding (or knowing there is a great possiblity of adding) a 2nd CFer into the family. Especially when it involves parent/child cfers. Bringing an infant into a home with someone that is colonized with PA and other CF bugs will be exposed and likely (JMO) colonize these bugs quicker than if they were born to a household without a CFer. This puts the infant at serious risk in the long term. So as mentioned earlier, make sure you are thinking of your childrens needs, not just your desires....that's what being a parent is all about.</end quote></div>

Yes! This does get looked over because the "discussions" always become so emotional. Why don't we lay out the facts...good & bad.
 
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Emily65Roses

New member
Lisa at 4:00, Claudette at 4:28... thank you.

People seem to think I'm saying "CF makes me who I am, and I'm proud of it... so please, spread it around." It's more like "This is what I'm stuck with, so I'll look at the good side of it... and the good side is it's made me a stronger person." Doesn't mean I think it makes sense to go giving it to anyone who passes by so that they can be a "better person."

You do the best with what you have. I'm with Lisa, if I didn't have my family and my fiance and my friends, I wouldn't have much of anything, and might not be here. I might add, I also agree with Claudette when she said:
<div class="FTQUOTE"><begin quote>Let's not talk life spans. I know you can come up with people that beat the odds but the fact is most parents burry their CF children which is not the norm for the rest of the population.</end quote></div>
Sure there are the lucky ones who get normal life spans, but the CF life expectancy is rather low for a reason. WE ALL DIE TOO D*MN YOUNG!! If you wish to compare that to having a cold, or breaking a leg, or whatever the hell other stupid "apples and oranges" comparisons you've got, feel free. But most of us are going to find those comparisons stupid and fruitless (hah... apples and oranges... fruitless... get it?).
 
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anonymous

New member
I know the analogy would go over most people's heads. I didn't think it was a difficult conceptual idea but some people are so stubborn that they can't see the similarities between two fates unless they are almost identical. Does everyone truly think you can work out of poverty no matter who you are? That would be one of the most absurd and bigoted statements I've heard on this forum but given recent trends here, not a surprising one. I guess all people in poverty are just lazy bums that choose to stay in it, huh? No, because of the way the world works there will always be people that live in poverty and some that will have miserable lives, more miserable than those with CF. People here seem to throw out all logic and set up strawman arguments, I never said CF is wonderful, some here must be afflicted by blindness as well, I called it a terrible disease, but it does not cause terrible lives. Yes some people with CF die early and some die late, this is true with life in general, alcohol kills more young people than CF does yet it's embraced by society.

CF isn't a choice but people don't seem to understnad parents aren't CHOOSING for their children to have CF, they want children and the risk is there, just like many other risks in life. It would be wrong to knowingly choose to have a child with CF but I see nothing at all wrong with having a child that has a higher risk of having CF. It's offensive to me that anyone would suggest that those with CF should not have been born if all the parents had had the information and all made those same choices these people are defending. That is eugenics. I can't believe some of you defend such a practice.
 
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Allie

New member
We've had this fight before. There's an old thread on poverty vs Cf if you want to fight that. I still say CF is a miserable disease, and if I could have protected Ry from the hell he went through, I would have, even if that meant going through life without him. And if I can keep another kid from going through the hell that is CF, I will.

A straw man arguement, by definition, is build on lies and assumptions.

A CF Carrier and a CFer have a 50% chance of having a CF baby. True.

Life with CF is often painful. True.

CF is invariably fatal. Well, 99% of people agree, so we'll call it true.

The vast majority, if not all, of Cf sufferers die before the average age of death (77.2). True.

So, given these facts, I consider it ethically wrong to willfully do that to someone. I don't just think that for CF, but any serious, terminal genetic illness, muscular dystrophy, Tay sachs, what have you. My cousin gave birth to a child with tay sachs and stopped having kids, that's just how we feel.
 
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