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

[anonymous]

Sheli,
Regardless where you are in this debate, I think everyone will agree that it doesn't apply to you. Even if this child does have cf, you <b>did not</b> plan this pregnancy. Short of abstaining, castrating your hubby, or removing both ovaries and/or your uterus, you cannot fully prevent a pregnancy. No method other than those I've mentioned have a 0% failure rate, including a tubal ligation or vasectomy. And, I don't think it's selfish for you to be excited about, or want this child. Simply wanting isn't selfish, it's acting on those desires. Now that the child exists, you have every right (actually, in my opinion, an obligation) to celebrate this child! From all of your posts, you truelly sound like a good mother. Prayers this little one is healthy and CF-free!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[littledebbie]

Sheli, I agree with anon, you didn't plan and even if you had, once
a baby is on the way you just have to love and celebrate.
 Congrats to you <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Allie]

Sheli, I think the fact that it was honestly not planned, and that you ARE worried about this child having CF, effectively remove you from the guilt factor. An accident is an accident, Darius was unplanned too. I have a problem with WILLFULLY trying for another, but stuff happens <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Scarlett81]

Allie,

I understand that you were just making a comment on "judgment" in general. I didn't mean to say you think that all people who choose to have babies with cf are murderers-assuming you don't.<img src="i/expressions/face-icon-small-happy.gif" border="0">
Just clearing that up.

Sheli,

I can not emphasize this enough-take from this website what works for you and leave the rest! Its like any other community! Not every neighbor will agree with you, but you won't do what each one says either, right? Also, its a factor that you didn't choose this pregnancy, but even if you did-that child is a blessing and a gift from God. If it has Cf its no less!- It will bring you more heartache than a non-cf child, but it will also bring you years of love and laughter.

Of course this is part of the big debate going on, but what if one of your non cf kids developed a serious disease? Would you have regrets?! I know, I know the point has been made over and over-this is deciding to take a chance among other things. But, what is, is. Sheli I wish you the best for your pregnancy, hopefully it will be a non-cf child. If it is, you will love it no less and it will bring you tons of joy like any other. Duh, Cf is a huge dissapointment, a pain, a serious added life issue. However, some of the personality traits in me that I like about myself and others like most in me I feel are a result of having my Cf. Strengths that have come from it. Everyone deals with it differently.
You seem like a good mom from what I've read of you. Don't start doubting yourself now!

 

[chantelfox]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> Sheli, Regardless
where you are in this debate, I think everyone will agree that it
doesn't apply to you. Even if this child does have cf, you <b>did
not</b> plan this pregnancy. Short of abstaining, castrating your
hubby, or removing both ovaries and/or your uterus, you cannot
fully prevent a pregnancy. </end quote></div><br>
<br>
<br>
Wait a minute...I was under the impression that some people felt if
I had a child at all (accident or not) knowing that a child would
have a 50/50 chance of having CF, I was irresponsible and all the
rest. I felt like <b>some</b> people were saying I should do
ANYTHING (including abstinence) to prevent any kind of
biological birth and only adopt or have IVF. So, now it's ok as
long as it was an "accident"? I remember someone saying
that if you had sex at all you were basically saying
"yes" to pregnancy. Someone please clear this up for me,
because I would hate to think there was a double standard going on
because I HAVE CF and the risk may be 25% higher if my partner was
a carrier than two carriers having a baby.<br>
<br>
Basically, I got the idea that people felt that unless a person,
who KNEW there as a possibility of passing on CF to their child,
made very attempt to not have a biological child they were selfish,
irresponsible, unwise..blah ..blah...blah. Yes, pregnancy can occur
if you have procedures done/ pills to lessen the risk of
pregnancy, however, if none of those precautions were ever
<i>even</i> taken and an "oops!" happens...from what
I have gathered from <b>some </b>people on here, that would
mean that they did not make every attempt to prevent having a child
with CF. Yeah? Neah??<br>
<br>
<br>
BTW...Sheli, Congratulations!!...I'm not upset or anything...I
don't see anything wrong <b><i>at all</i></b><i> </i>with you
having a baby. A flag just flew up when I read some people's
responses to your pregnancy. Some people who are congratulating
you, made me <i>feel I would be </i>irresponsible unless I
made every precaution to NOT have a child with CF.  

 

[anonymous]

Chantel, I'm the poster you're quoting. You are right, I was incorrect in saying that <b>everyone</b> would agree that the debate does not apply to Sheli. I apologize. Not everyone will agree with that statement. I would<b><i> hope</i></b> though that at least most would agree. As far as <b>MY</b> belief, I would not knowingly conceive another child with another carrier. And, if I had CF, I would not conceive a child with a carrier. The risk is too great. That said, I do believe that everyone has to make that choice for themselves, regardless of what any of us think. And, if I accidentally conceived a child under those circumstances, I would celebrate his/her life and love him no differently than if he were CF-free. Also, I think it is unfair and unrealistic to expect that someone should remain celibate, castrate one's spouse, or remove one's uterus/ovaries in order to prevent pregnancy under those circumstances. That said, if someone feels strongly enough about the risks, I don't think they'd be out of line to resort to drastic measures to reduce or eliminate the risks. I personally had my tubes tied, and later had a hysterectomy (for other reasons). But, that's just my beliefs<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Ender]

I have just a few things to say to this post overall, and it's gonna be quite general because this post is way to long to go into detail.

For those of you that think it is irresponsible for having a kid knowing they might have cf....(considering that you have cf and know the hardships), do you think that your life is not worth living? That's what it seems like to me, at least subconciously. I think with new technologies that are comming out...we have to ask ourselves...what makes a human? What makes an individual? You start weeding out possible lives because of say...colourblindness, sex, genes linked to cancer etc, you start taking away fundamental aspects of human existence. There might be situations where it is warranted...ie severe retardation, huntingtons, etc, where there is NO chance for a normal life, but then again, these people that are born might enjoy the life that they have.

I was reading about children with severe autism. They have found that they are not mentally retarded, they just cannot express themselves. They have found a way to get passed that with the help of computers (ie hooking electrodes to their brains, and having their thoughts being expressed on monitors). I remember reading about how they did this to one child, and her first words were "I love mom"

Say you were going to have a child with huntingtons and you chose to go through with it. Later on they found that you knew of thier condition, yet you went ahead with it anyways. Lets say they led a great, amazing life, do you think they would be angry that you gave them life, rather than killing them before term? Perhaps that person with huntingtons had kids, and they had kids, and one of those kids developed the cure for cancer. Would that have happened if you hadn't of given birth to that original person with huntingtons.

It's crazy to even start thinking about stuff like that. CF, as of now, is not a death sentence...well maybe, hehe, but there is hope. It isn't something like huntingtons where you KNOW you will die at this age...with these symptoms etc. If you are born now, I think there is a VERY good chance that you will live till 50+ no problem. I'm an optimist, but with some good cause.

Humans are not seperate from nature, and i think it's something we forget sometimes. Why do we suffer, why do are we born into shitty conditions. Well, because we are governed by the same laws that apply to all living beings, and that's what makes life, and our evolution to this point so amazing. To start messing with it is something we should take some serious thought into.

Am i upset that i have cf...yes. Am i happy to be alive, yes. If my mother told me that she had the choice of killing me before I was born, and asked me if she made a good choice, I would say, yes, thank you for giving me this life. It's rough, but it's also pretty amazing

 

[Allie]

I am assuming, by her saying it was an accident, that she DID takes measures to prevent it. Hannah and Michael had a vasectomy, and Darius was still concieved. Most parents that feel bad and worry about the next kid having CF, feeling guilty , etc.....didn't actively try for the kid. But, if she didn't take measures to prevent it, I am willing to retract my "an accident is an accident"

 

[anonymous]

I too thank your mom for giving you life Ender. You insights are right on.
---------------
A fellow cfer

 

[Allie]

Now, I am not advocating for people with HD to procreate, I lump it into my "serious genetic disease" category. I jsut need to point out that what you're saying makes no sense, Ender. Saying that CF is better than HD boggles my mind. Let's look at some things.

<div class="FTQUOTE"><begin quote>Symptoms of Huntington's disease usually become noticeable in the mid 30s to mid 40s</end quote></div>

Okay, so HD sufferers are showing symptoms at the time that 50% or more of CFers have passed on. They have lived a completely normal life up till now, whiel CF patients generally have stuff to deal with from the get go.

<div class="FTQUOTE"><begin quote>Mortality is due to infection (mostly pneumonia), injuries related to a fall, or other complications resulting from Huntington's Disease rather than the disease itself, and is usually 10 to 25 years after the onset of obvious symptoms</end quote></div>

Okay, so about 35 + 10 is 45, if we plan conservatively. let's say 45 + 25 is 70, if we go totally optimistic.

Now, according to the Cystic Fibrosis Foundation registry, 12% of CF patients are over 40. Twelve. So a death rate from 45-70 doesn't sound so bad, I guess.

<div class="FTQUOTE"><begin quote>. It isn't something like huntingtons where you KNOW you will die at this age...with these symptoms etc. </end quote></div>

I don't see how not. Both diseases have an average age of death, both of a common cause (respiratory failure in CF, Pneumonia or something in HD). Both diseases have major advances helping people live longer....I don't see how it's so much better.

 

[anonymous]

After reading all of the warm and fuzzy responses to my post, I have decided that it is really pointless to try to share different insights and feelings with most of you. This is supposed to be a support group yet there doesnt seem to be much support going on.

My girls know they can talk to me about everything. I have been with them every minute of any episode they have gone through. I have never missed a beat and
I never will. But, we will not have many pity parties here and if that makes me a bad mom than so be it. I am teaching them to be strong like me because we will
fight and we will endure. No matter what!! I cant imagine telling someone to think about their childs death -- its just not right or normal.

Chantel, I too noticed how the stories changed. What makes you different than the other CF woman who wrote that she was trying to have a baby? This thread is just to confusing. Anyway, you do what is right for you. I know many
CF Moms who are leading productive lives and have multiple children.

Deb <img src="i/expressions/brokenheart.gif" border="0">
( I usually post a <img src="i/expressions/heart.gif" border="0"> but dont feel that way right now)

 

[Ender]

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

Now, I am not advocating for people with HD to procreate, I lump it into my "serious genetic disease" category. I jsut need to point out that what you're saying makes no sense, Ender. Saying that CF is better than HD boggles my mind. Let's look at some things.



<div class="FTQUOTE"><begin quote>Symptoms of Huntington's disease usually become noticeable in the mid 30s to mid 40s</end quote></div>



Okay, so HD sufferers are showing symptoms at the time that 50% or more of CFers have passed on. They have lived a completely normal life up till now, whiel CF patients generally have stuff to deal with from the get go.



<div class="FTQUOTE"><begin quote>Mortality is due to infection (mostly pneumonia), injuries related to a fall, or other complications resulting from Huntington's Disease rather than the disease itself, and is usually 10 to 25 years after the onset of obvious symptoms</end quote></div>



Okay, so about 35 + 10 is 45, if we plan conservatively. let's say 45 + 25 is 70, if we go totally optimistic.



Now, according to the Cystic Fibrosis Foundation registry, 12% of CF patients are over 40. Twelve. So a death rate from 45-70 doesn't sound so bad, I guess.



<div class="FTQUOTE"><begin quote>. It isn't something like huntingtons where you KNOW you will die at this age...with these symptoms etc. </end quote></div>



I don't see how not. Both diseases have an average age of death, both of a common cause (respiratory failure in CF, Pneumonia or something in HD). Both diseases have major advances helping people live longer....I don't see how it's so much better.</end quote></div>

sorry huntingtons was a bad example, but you missed the whole idea. Thanks for pointing that out though.

 

[Allie]

Oh, I got the point, it was the same everyone else has been saying "What if, what if, what if" Which is only a feasible arguement if you don't believe in the use of birth control, because then you are not giving EVERY SINGLE CHILD a chance to be born.

 

[Ender]

I suppose you're right, but birth control now is somethng that we can't really control. When you decide to have a child, that's when you can make the choice of what it will become, and that's when it becomes relevant.

If i was to have a kid, would i check to see if my mate was a carrier? Probably not.

 

[Ender]

One more thing. I read this on a website about genetic disorders:

Disposition to muscular dystrophy, sickle-cell anemia, Tay-Sachs disease, certain cancers and numerous other diseases also have locatable genetic origins.

What would this world be without Stephen Hawking? And how many other amazing individuals would not have been born if we were to terminate all fetuses, or chose to not have kids with some of these disabilities? You think this world would be the same place?

 

[Allie]

<div class="FTQUOTE"><begin quote> but birth control now is somethng that we can't really control</end quote></div>

Yes, birth control is something you can control, for yourself anyhow. Your argument seems flawed to me unless you believe that ALL birth control is wrong for the same reason.

<div class="FTQUOTE"><begin quote>If i was to have a kid, would i check to see if my mate was a carrier? Probably not. </end quote></div>

And I'd stick to my guns, and think that it was stupid to do. Philosopical disagreement

 

[Ender]

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

<div class="FTQUOTE"><begin quote> but birth control now is somethng that we can't really control</end quote></div>



Yes, birth control is something you can control, for yourself anyhow. Your argument seems flawed to me unless you believe that ALL birth control is wrong for the same reason.



<div class="FTQUOTE"><begin quote>If i was to have a kid, would i check to see if my mate was a carrier? Probably not. </end quote></div>



And I'd stick to my guns, and think that it was stupid to do. Philosopical disagreement</end quote></div>

When i say can't control, i mean it is already in mainstream thought as acceptable. Knowning about genetic dispositions and aborting fetuses based on that is new, and can be changed?

And Allie, i don't get it. What if Ry's mom decided not to have him because she knew that she had a possibility of concieving a child with cf. There would be no Ahava.

 

[Allie]

Tay sachs is why my cousin stopped having kids, and why every kid in my family has been tested as a carrier. I am one. And I have told every person I dated that they were getting tested, and if they were a carrier, none or adopt. So I still stick by it, because I abide by it.

<div class="FTQUOTE"><begin quote>What would this world be without Stephen Hawking? And how many other amazing individuals would not have been born if we were to terminate all fetuses, or chose to not have kids with some of these disabilities? You think this world would be the same place?</end quote></div>


Okay, first off, Stephen Hawking has ALS. ALS is not genetically passed on. Secondly, this is the same argument for not using birth control at all. What would the world be like without Galileo? Or Babe Ruth? Or George Washington, or the myriad of other people born without genetic defects. Amazing individuals don't get born all the time, this is no different.

Edited to add: <div class="FTQUOTE"><begin quote>And Allie, i don't get it. What if Ry's mom decided not to have him because she knew that she had a possibility of concieving a child with cf. There would be no Ahava. </end quote></div>

I wouldn't know. If he had never been born, I wouldn't miss him, because I wouldn't have ever known. Same with me, if I had never been born, no one would no. You can't miss someone who never existed.

And I didn't say abort. I said don't try for a child. Different.

 

[Ender]

hehehe you're right, this is why you shouldn't argue and drink.

Regardless, name the people that were born with genetic defects that made crazy contributions to society, and wouldn't be here if we chose not to concieve them. So basically, their contributions are not unique, and that eventually some normal person would come about and offer the same ideas that these amazing people would have come up with anyways.

 

[Allie]

I looked, and I could be wrong, but I can't find anyone with a genetic defect that made an insane contribution to society. *shrug* I'm sure there is one, but the closest I got was Woody Guthrie, and I'm not sure in can be argued he impacted the world.