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

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Emily65Roses

New member
<b>One thing I wish to add, that I think everyone should stop and pay attention to for just a minute.</b>

She is not ready to have kids now, she has said so. She is asking questions ahead of time in order to gather information, plan, and figure out what the right decision is for her. <i>If you don't agree with what she said, if you don't agree with her opinions, whatever, that's fine</i>...

But we should all allow her to ask questions and learn from them in order to make intelligent decisions for herself.

I say that makes her more mature than some of us are giving her credit for. Someone completely immature would say "This is what I want, and I'm doing it no matter what, neener neener." She's asking questions, getting information, and thinking all of it over. <u>She may not be ready to have kids yet (though she has said that herself, I might remind us all), but she's well on her way, by being adult enough to suck up any pride and ask a question like this that will certainly get people to jump up her @ss.</u>

Kay that's all.
 
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Lilith

New member
When I replied, I made sure (just for this purpose) to state that
it was my OPINION ONLY!  Never said my word was god, and I
don't believe anyone else did, either.  Giving an opinion is
your right as a human being.  If you disagree, than disagree.
 Don't turn around and jump down the throats of those who
don't see eye to eye with you.  All it makes is one vicious
cycle.<br>
<br>
And, just to point out, I think all of us sympathized with her on
the fact that CF takes a lot away from us.  No one was
'attacking' her on that note.  This is a controversial topic.
 You can't expect not to get differing opinions (sometimes
harsh, because things can't always be 'sugar-coated').  The
fact is the root of this issue is something we all can agree on; CF
takes yet another choice either away from us, or totally f***s it
up.
 
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chantelfox

New member
Thank you to all who have given me helpful advice and not just
judged me. I really appreciate the understanding (not necessarily
agreeing) from those people. <br>
<br>
To those who have called me immature and told me I am not
adult enough to make "adult decisions", I am sorry for
whatever I may have said to offend you. But reading back through my
posts I do not see where I wrote "adoption is wrong for
anyone" or "people who adopt are wrong", so I am not
sure where all the blasting is coming from. I have REPEATEDLY
stated that I am not ready for children now (and let me elaborate
for those who jumped on the high horse and judged me). When I say
that I am not ready for children...that means I AM NOT EVEN
TRYING. (NOT that it's wrong to have children with a partner
instead of a spouse.) I would NEVER plan to have a child before
marriage. This was a choice I made a long time ago. My BF and I
plan to be married and probably would be already engaged if WE
HADN'T DECIDED LONG AGO TO WAIT TO BE MARRIED AND HAVE KIDS
UNTIL WE WERE <b>FINICALLY READY</b> AND FINISHED WITH SCHOOL. I
hope this print was large enough to catch the eyes of those who
choose to form their opinions and post without knowing all the
facts or who may have trouble with reading comprehension. So,judge
all you want... I <b>never</b> said adoption was wrong, I
<b>never</b> said that I was trying to have a child despite the
chance it may have CF.<br>
<br>
I will say once again, and hopefully people might read this, that
adoption was something I have wondered about, but am not sure it is
right for me and my "future husband". I was trying to do
the "adult" thing and plan for my future by finding out
all the facts about having a biological child. I admire those who
adopt. It really breaks my heart to see so many children in foster
homes. Trust me, I have worked with many. Yet, experiencing
pregnancy is something I have wanted for a long time, long before
my mom wanted me to have children and long before I ever met my
BF.<br>
<br>
One thing that we do teach in school to <i>children</i> is not to
judge others. That everyone is different and comes from different
places and backgrounds. I find it ironic that a few people on here
 who say "a person is not adult enough to make adult
decisions" and tells a person they are "immature"
because of their personal opinions and feelings are probably
people who do/ will be telling their own children not to judge
others.<br>
<br>
Regards to all who are open minded and have good advice to offer.
Take care.
 
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Allie

New member
<div class="FTQUOTE"><begin quote>I would NEVER plan to have a child before marriage. This was a choice I made a long time ago. My BF and I plan to be married and probably would be already engaged if WE HADN'T DECIDED LONG AGO TO WAIT TO BE MARRIED AND HAVE KIDS UNTIL WE WERE FINICALLY READY AND FINISHED WITH SCHOOL</end quote></div>

That is excellent, and I apologize for seeming to hound you, even though it was aimed at people who would plan kids outside of a marriage, because I always have and will think that it's inappropriate.

You did say some things about adoption that upset me (If that wasn't blatantly obvious.) And they still upset me, because they were wrong, and based on a lot of myths, so I won't apologize for getting on that soapbox. But I apologize for the marriage thing, it's good that you planned to wait.
 
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Seana30

New member
Chantel,

First let me say I am sorry to hear people are bashing you. People here can have very strong opinions.

I wanted to tell you my opinion on some of the issues here.

First, I was adopted. I understand your fear of "not feeling as close to the child" but I can say I never felt that way growing up. My sister and I (both adopted) always felt just like the rest of the kids. There was never a feeling of "being different".

I also wanted to state my opinion on having children to young and out of wedlock.

I had my first child at the age of 17. Was this smart......no, does it make me a bad parent.......ABSOLUTELY NOT. I think I am a really good parent. Don't let people try to tell you that you are to young to become a parent. That is a personal choice that can only be made by you and your BF/spouse/significant other.

I also DO NOT feel you should have to be married before having children. My husband and I lived together for 5 years before we married. We had a child while living together. By living together first, when we stepped up onto that alter we had no doubts we wanted to be together. We knew the good and the bad things about each other, and STILL wanted to be married. This is another issue that is very personal and can only be made by you and your BF.

I wish you the best of luck no matter what you decide.

Take care

Seana
 
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chantelfox

New member
Seana, I agree....Having a child out of wedlock isn't
"wrong" (whose to say what's right or wrong) and it
<i>certainly</i> doesn't make you a bad parent. If it were
wrong...my brother, whom I love dearly, might not be here today.
Yes, he was an accidental pregnancy, but the world would not be the
same without him. The main reason I made the choice long ago to be
married before having kids, was because I know how hard it was on
my mom financially to be a single mom. BUT, my  mom is so
awesome, so having a child out of wedlock CERTAINLY doesn't make
you a bad parent. If anything it made her a stronger parent. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
It's somewhat fascinating that such a topic can become so controversial and heated. I am lucky in that my partner and I both do not eve want kids. But I suppose someone has to have them. Personally I do not see anything wrong with having a child with CF. There are many wonderful people that have it and live fulfilling lives. Just because it's harder doesn't mean that the life isn't worth living.
 
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Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Just because it's harder doesn't mean that the life isn't worth living.</end quote></div>

Of course not, no one said that. But why make the child's life harder on purpose? Why have a child knowing the risk when you can have a child through some other means?
 
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thelizardqueen

New member
Life is a gambal in general. I've heard of a couple of CFers, who had their partners tested to see if they are carriers - and they got a clean bill of health. Fast forward to 9 months later - CF mom gives birth, and finds out that child has a rare mutation that wasn't even on the panel of tests that were done. Yes, CF sucks a**, but its made me the person I am today. I'm turning 25 next month, and I'm nowhere near the end of my life. You could have a child without CF, but could end up losing that child to a car crash at 14, or cancer, or some other sort of medical condition. Yes - you didn't intentionally give your child a way of getting those things, but my point is life happens. There's nothing wrong with having a child with CF. Personally, for me (and I'm sure people will hate me for this), I just might take that chance. I don't look at it, as oh I have a 50% chance of having a CF child - I look at it, as I have a 50% chance of not having a child with CF. I have to look at things in a positive light - with the glass half full not empty. And yes, my partner at the time who was tested and we found out that he wasn't - he and I had talked about trying anyway, and it was something we were considering. Its all about personal choice. YOUR personal choice.
 
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anonymous

New member
<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>

Just because it's harder doesn't mean that the life isn't worth living.</end quote></div>



Of course not, no one said that. But why make the child's life harder on purpose? Why have a child knowing the risk when you can have a child through some other means?</end quote></div>

This argument can be used for many things. Why have a child if they're going to be shorter or less intelligent, it'll make life harder. Why have a child if they're going to be prone to gain weight more, it could make life harder. We could live in a society where we screen every trait and try to make things as easy as possible by choosing babies based on what we consider is "easiest" in life and avoid all the challenges that make life worth living in the first place. Tell me Emily, are you happy or unhappy to be alive? Do you feel inferior to those without CF, that your life somehow has less meaning?

Why have a child at all? Because of primal urges, I would say. Those same primal urges and desires I would argue are based in our evolution and that's why people prefer to pass on their own genes. That's beside the point. People will do what they desire to do. I have no desire to have a child and could simply ask people why they would want one. However I realize not all people feel the same and likewise not all people have a desire to adopt other children.
 
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Emily65Roses

New member
<b><u>Anon</b></u>, that's a very good point, and I might add, very true. I didn't say we should screen for every d*mn thing. And if he's not a carrier, and Chantel is able to have children, I say go for it. But if you know there is a <b>very elevated risk</b>, why go there?

Having said that, my not being one to openly take a high risk for giving a child CF... does not mean I'm unhappy. It does not mean I wish I wasn't alive. That's a big difference. I'm already here, and arguing that point will get you/me/everyone nowhere. You can't argue that kind of point with the person already in question existing. Not only existing, but existing for a number like 22 years. I don't feel inferior, and I don't feel like I have less meaning. I actually feel like I squish more meaning into less time. As I imagine most of us feel.

As Liz said, CF has made me who I am. I'm d*mn proud of it. I wouldn't be the same person if I was healthy, and I'm not 100% sure I'd like that hypothetical person. No matter who you are, you have troubles and go through conflcits, and that makes life worth living. But why purposely give a child a "conflict" that'll off 'em before they get to see their kids grow up? I am of course, speaking generally. But you get the point. You can have conflicts that make you a good person, without such a giant conflict like "Hey you're going to leave your spouse a widow/er and your children mother/fatherless before they're old enough to graduate high school!!"

There's a big difference between conflict... and watching your children die. I do not agree with screening for every "defect" and doing things like PGD (I believe that's correct... Julie??) for stuff like... gender or hair color. But if you go in KNOWING that you've got a 1 in 2 chance of giving that child a disease that will, as of the information you have this instant, kill them in half the time they <b>ought</b> to have, that doesn't make any sense to me. I'm not one to believe in "leaving it god, and s/he won't give me anything I can't handle." I don't know whether you're a regular or not, Anon, but I am <u>not</u> religious, and that theory just doesn't really sit well with me.

I hope that answers your questions.
 
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Allie

New member
Emily basically said it all. I don't think we can say that CF is a terrible disease and then say "But it's okay if kids have it, it's not so bad". It's one or the other. And those of you who say "Yay! Cf kids!" had best not ever complain about how much it affects your life. If I could, I'd show every parent who thought about taking that chance a video of the last months of Ry's life. After that, decide if flipping that coin is really fair to them.

Cf is hell. That's my stance, and I don't think I can ethically say it's okay to give your kids that kind of pain. If that makes me a b****, so be it. But I loved Ry, and when you truly love someone, you don't want them to go through hell for your own selfish desires. That's why I didn't force him to get a tx, or keep going when he was ready to stop. Sometimes, you have to sacrifice what you want.
 
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anonymous

New member
I am so shocked at all of the negativity in these posts.

Allie, you say how much you loved Ry but what if his parents didnt have him.
Think about how much this would have affected you and your life.

I think that we are forgetting about the precious life that everyone has -- CF or no
CF. When you have a child, you never know what the outcome will be. No child is
perfect. Some have learning disabilities some have physical disabilities but each person is a gift of love into our lives.

You can either choose to dwell on the sunshine they bring or the darkness CF brings. Ill choose the sunshine!! Deb<img src="i/expressions/heart.gif" border="0">
 
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Allie

New member
<div class="FTQUOTE"><begin quote>Allie, you say how much you loved Ry but what if his parents didnt have him. Think about how much this would have affected you and your life. </end quote></div>

I wouldn't have known. Life is full of variables. What if I hadn't been born? What if someone else I might have married wasn't born? How would I know? You can't miss people you never knew about....

no child is perfect. But there's a difference between trying fate and getting slammed. Like getting into a car wreck, it can happen to anyone, but if you're weariving in and out of traffic, speeding, it's more likely.
 
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Emily65Roses

New member
We're not saying go out and kill all of the currently existing CFers. I'm also not saying... oh well don't have a child at all.

I'm saying if you know the risk is incredibly high for one particularly nasty disease or another, why risk it? You can have a child by one of a few options, and still have a child that will enjoy his/her life, and be glad he/she's alive.

I'm not saying hope for a perfect child. I'm saying why <b>purposely</b> and <b>knowingly</b> give your child an essential death sentence?

As a disclaimer, I might add, I don't focus on the negative. I'm engaged to someone I love more than anything, I'm going to school, I have a new ferret who's the coolest little dude... lol, I enjoy my life. Offering advice in this area regarding not having CF children does not mean I hate my life.

One final note... Chantel, none of the last few posts I have left have anything to do with you. I am just responding to other replies. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Pete

New member
Chantel

My partner (32 CF double lung Tx) and I (32 no CF carrier...as far as I know) have been considering the option of having children at some stage, when it comes that time and so long as the situation allows we'll be going through what you are now.

In Australia the possibility of adopting is non-existant in our situation, it would FOR US be the final option (but not least) we'd consider anyway because passing the genetics ALONG with the name is what we both want first and foremost, NOT because of ANYTHING to do with mini-me's or what the hell ever some call it but because leaving a genetic legacy is important to us...and so it seems to you guys.

You have the right AND should also be given the right to ask ANYTHING you want and voice your opinions (so long as it's not discrimintory, rascist or hurtful) without being judged or belittled for those opinions.

Everyone makes life decisions based on whats best FOR THEM and THEIR situation, but the choices you make may not be what EVERYONE wants due to their own personal reasons.

Get your boyfriend tested for the CF gene and then take it from there, best wishes and I hope it works out best for what you and your partner want and decide on....

Pete
 
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PLUCKY

New member
Okay late to the party as usuall this is my opinion and my opinion only.

Being a male with c.f. that cannot reproduce I would love to have my own kid through the treatments available today. When we first starting looking into having a kid me and my wife decided that we didn't want her to get tested for the gene. I look at it as if I am able to have my own kid and god choses to give that kid cf then so be it. There are allot worse things in this world then c.f. I agree with above poster c.f. made me who I am today.

If god willing I can't have a kid then I am not against adoption. I think it is all a personal matter and there are lots of kids out there who need homes and care that should be provided that.

Again just my 2 cents
 
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anonymous

New member
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">
 
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