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>chantelfox</b></i>

I meant that I don't think I could handle having a child with CF
because I think about all the time and energy went into having me
and I wonder if I could physically handle it.



Doesn't it make any  of you who say people with CF should not
want to risk having children and passing on the genes, make you
feel cheated? We have given up so much already. We spend so much of
our lives doing things that other people without CF don't have to
do. I just get angered that this is one more "thing" that
CF gets to take away from me..the right to give birth to my own
child. I know that "that's life" and I shouldn't want to
pass it on to my child, but it doesnt change the fact that I get
pissed about how much I have already missed out on in life because
of this disease.</end quote></div>

this is another reason why i think you're not anywhere near ready to have kids.

at some point in your life, you have to realize that some things aren't about you.

having a child isn't about you. it's not about what you want. it's about what's best for the child. which often can be quite the opposite of what you want.

so feeling cheated, whatever. it's not about you. <b>you're cheating your kid if you create one that has CF because you wanted to have one naturally with you BF. you cheated your kid if you got so sick from pregnancy that you can't be there 100% for your child. <u> this isn't about you. it's about the kid. </u></b>
 
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chantelfox

New member
I already said that I wouldn't want my child to have CF, hence the
reason I said that I <i>hope</i> my BF isn't a carrier. I know I
wouldn't want to have my child go through what I have been through.
And I never said that I would have a child even if he is a carrier.
I said I was unsure about adopting, because I wonder if the bond is
the same. If I couldn't bring myself to adopt and knew that he was
a carrier, we just wouldn't have kids, despite our desires. I would
NEVER put anyone I loved through what I have been through. But,
you're right...I am not ready for kids, because I don't <i>want</i>
them right now. In the future yes, and maybe I would be more
willing to adopt if I was ready to have a child. Oh, and if I was
not healthy enough to carry a child, than of course I would not
even attempt to have a child. What's the point, if it would make me
so sick that I couldn't enjoy him/her or be there for him/her while
he/she grows up. BUT, with all that I have said, it doesn't change
the fact that it's frustrating and angering that CF takes away
 and cheats us of so many things that we would have/be able to
do if we didn't have this miserable disease.
 
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Allie

New member
She didn't say chantel sucked, she said people do. I think people suck too. And she does have a point about putting things in order, although it's passe to think so.
 
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thelizardqueen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lgrace217</b></i>

I would recommend that you find out if your HUSBAND is a carrier
and not your boyfriend. Let's put things in the proper order shall
we? You shouldn't do "grown-up" things like make a family
if you haven't gotten to the point of being able to make wise
decisions like a grown person.</end quote></div>

Sorry to say this, but I take offense to this statement. I had my BF tested to see if he was a carrier (we have since broken up), and he and I were planning on having kids before we walked down the aisle, because to us - kids were far more important then a piece of paper. There is no "proper" order in how to do things. Have kids before marriage if you'd like - have kids and don't get married, get married and have kids. There is no proper order to do things, so long as you know what you're getting yourself into, and you're ready for a big decision like marriage or kids.

You don't need to be married to have kids. That's such a 1950's mentality. In my opinion anyway.<img src="i/expressions/face-icon-small-smile.gif" border="0">

Edited to add: he and I were very commited at the time, and were planning on spending the rest of our lives together, so in what order we did things didn't matter to us. Life happens, and not necessarily the way you try to plan it.
 
E

Ender

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lgrace217</b></i>

I assumed this was a place where I could express my opinion. I
guess I was wrong.</end quote></div>

Meh, don't worry about it. Sometimes people here (including me) get all high up on their horse thinking they know what is good for mankind, or their opinions are law. Just say what you gotta say and try not to fret. Or, go nuts and fight back hehehe...it's always good fun
 
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anonymous

New member
<div class="FTQUOTE"><begin quote>You can truly love someone who doesn't share your DNA. You love your bf, right? If people can't get that, they probably shouldn't be parents anyhow.</end quote></div>

Amen, Allie. I have two adopted children, ages 20 and 16. They are both Korean and are not siblings by birth. Each was adopted as an infant. The minute I was given each of my children's pictures, they were forever mine. The feeling was instantaneous and overwhelming, even though they were not with us physically until several months afterwards. I am always amazed that someone can profess to love a husband or wife but wonder how they could love an adopted child. Love is love is love. Neither blood nor genetics creates love. Human will creates love. It is one of the great wonders of life.

I join with many others in urging you to hold off on having kids until you can truly understand that. Otherwise, what will sustain your love when your birth-child doesn't turn out to fit your perfect picture?

Debi
54 w/cf
who forgot to sign in before posting, sorry
 
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dyza

New member
Chantel, I have two CF genes, fortunately for me I am undx with CF, two identical genes I have, RH117, my wife has D508, we found this out after our second child was born, he has cf, our first child is a carrier. So this fits the question that you originally asked, what are the chances.....50 / 50. We would have liked more kids, age is against us now, but the risks now apparent to us are far too great, in fact I am gouing in for a vasectomy at the end of September. We tried long for a second kid , 12 years of a difference between them, and we considered adoption, IVF and fostering, there was never any question of an adoptive child not being ours, we know that he/she would have been loved as our own.

You will know youself wether adoption is for you, no-one can answere that for you, but it is your, and your bf decision, not your mother, not me not anyone on here, we can only give advice......take the advice.
 
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welshgirl

New member
chantel, there are plenty of birth mothers with cf on this site , i hope that some of them will give you their opinions.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
<i>Originally posted by Lgrace</i>


I would recommend that you find out if your HUSBAND is a carrier
and not your boyfriend. Let's put things in the proper order shall
we? You shouldn't do "grown-up" things like make a family
if you haven't gotten to the point of being able to make wise
decisions like a grown person.


Just so you know, my BF and I talk about marraige all the time, since we have been together for nearly <i>3 years</i>. I actually think that because a person chooses to think about things earlier than later and thinks about their future makes them more of an "adult". Maybe you should think about that before you spout off your "adult opinion".
 
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anonymous

New member
How about IVF as an option? I mean if biological children are that important then you could do IVF and they can check for CF before implanting the egg back in you. I am sure this won't be popular with everyone, but it is an option these days even when both parents don't have any infertility problems. It will cost you 15,000 or so, but it is an option. There are some people who do IVF for the purposes of only perdicting the sex of their kids which I do disagree with, but it is possible these days and is legal to do.
 
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welshgirl

New member
well said chantel<img src="i/expressions/face-icon-small-smile.gif" border="0"> i was 22 when i had my first son and age does not affect ones ability to be a good parent.
 
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DietRootBeer

New member
Chantal,

It is OK to feel angry about your situation...Listen to your heart NOT your neighbor. If you do not feel adoption is right for you then it is OK...adoption is not for everybody. If you really want to have your own baby and your partner is not a carrier and you are healthy enough to do it( obviously have it cleared by your CF team) then go for it. This is your choice and you and your partner must choose what works for you as a couple. If you end up deciding not to have children...again your choice. Try not to get overwhelmed with what everybody else thinks is right for you. THEY DO NOT KNOW YOU OR YOUR PARTNER in real life so it is really none of their business to judge you. You came here for advice and you got some but take it all with a grain of salt. Do what you feel is best for you when the time is right....
 
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chantelfox

New member
Thank you all who have given me good advice. I will be sure to
consider everything when I am ready to have kids. I have always
been a planner and this is the reason I even started this topic.
It's not because I am not an "adult" and am recklessly
trying to have a kids. Quite the contrary...I want to plan for my
future sooner than later. I hate going into  things
unprepared. This is why I was trying to gather advice about
EVERYTHING..including statistics on having my own child if my
"future husband" is a carrier, adoption etc.
 Knowing know the high stakes of having a child with a
carrier, I don't plan on taking that risk. So, once again thank you
all so much whose provided valid and helpful "adult"
opinions. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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JazzysMom

New member
For years I "talked" myself into thinking I didnt want to be a mom & that was from always being told I couldnt/shouldnt be one. That was all based on actually being pregnant etc. Adoption was never mentioned or thought of for some reason. My pregnancy wasnt planned & although it was a great experience & I had no problems if I had better "guidance" I would have adopted. I also would have adopted more than 1 child. I love Jazmine with all my heart & am totally grateful that I had her, but I love my step kids just as much & they were adopted by husband & his first wife. Adoption isnt for everyone, but I feel that many (not all) of those that are against adoption think that way for very selfish reasons. Those people that have adopted & the "connection" isnt there I would bet is not from the adoption part as much as the people themselves. I know many people that conceived a child & the connection isnt there also. Its a big decision either way because the parenting truly comes into play when that child gets sick or needs help with homework or wants to join soccer etc. Its more than the conceiving & carrying. Often peoples views change with time/maturity also as lifes priorities unfold normally!
 
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LouLou

New member
I just want to add my husband and I's point-of-view that's along the lines of Lgrace's comment. This is what has worked for us. I'm not saying it's what other people should necessarily do.

While dating, before marriage we discussed our interest in having children of our own one day. We discussed the many options. I was clear that if my health was not great I didn't want to carry my own child (as hard as it was to think and speak so negatively). I asked him how that felt. Like Amy said it's important to make sure we shared the same values. I asked him if he wanted to get carrier testing before marriage because if he is a carrier I'd rule out carrying my own child. If this was an important thing, I sure didn't want to hold him back from having his own baby (didn't know about PGD then or didn't consider it an option). He agreed that we shouldn't take a 50-50 chance of bringing a CF baby into this world. He wanted to have his own baby but more strongly he wanted to be with me...for the rest of our lives. To quote he said, "I'm marrying you for who you are and not your childbearing abilities. We'll cross that road when we get there babe." So shortly after marrying we got him carrier tested. We did this years before we were stoked to have a baby in order to ease frustrations and not get our hopes up. We were blessed with a negative carrier test. We realize that there's still a chance he's a carrier but we're not concerned enough to not try for baby. In October we plan to start trying for a baby. If it doesn't happen with little intervention, we likely won't go to extreme measures...we through around the idea of adoption but I'd really like to be pregnant.

Best wishes to you and your relationship.
 
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