Having more children?

2

2sickkids

Guest
It very bold to think that every parent of CF children is healthy. I am very not healthy. Also being pregnant put my life at risk because of my poor health. I had medical help to get pregnant with my first child. The week we found out about his CF I had surgery to help us have another baby. The day I found out my son had CF I stopped taking hormones and we started using protection. Because we wanted to talk about this. Two months later I was pregnant even with condoms used. I could have chose not to have my second son. I did though. Has everyone forgot the 1in4 chance of means a 3-4 chance of not having CF. Lots of people are unknown carriers are they wrong for having more kids. If for some freak reason I ever became pegnant again. I would not do an amnio I would have my child with or without illness. As for the cancer thing you do realize some families are more likely to have that right should they not have kids? Life is not ment to be a piece of cake. I know that for a fact. Everything I have gone though in this life has made me just that much stronger. Mine has been like a fall off a 500 ft tree hitting every single branch limb and twig along the way and landing on a hill of broken glass rolling down that into a field of roses. Though the field is thorned it is much better then everything before it.
 

anonymous

New member
I am a mother of 1 CFer and 1 without and would love to have another child but won't take that chance. I have been looking into PGD as many hospitals in my area (philadelphia area) offer this procedure. You take Invitro and add on PGD costs which is genetic screening of the emrbyos and only implanting the healthy ones. Keep in mind, most insurance companies do not cover Invitro but some will cover the genetic testing if you have CF in your family. Look into it and certainly check with your individual insurance company before proceeding.
 

anonymous

New member
Yes it is tax deductible. The same rule applies to other "medical deductions" though, to be able to deduct anything your total medical expenses musy be at least 7.5% of your income. The average price for invetro runs anywhere from 10,000-18,000 (or more) so unless you are in a very high income and tax bracket, it can help you out. The bottom line is that you would probably end up paying nothing in taxes for that year. You couldn't get anything MORE back than what you paid in taxes (whereas with a CREDIT-like earned income credit or child tax credit you CAN) but if you shelled out 2k in takes, made 42,000 that year and had 14,000 in medical expenses, you could get that 2k back-these numbers aren't exact but just an example.

Em or anyone else, if you have anymore questions about invetro, I am compiling something for male CF factor infertility and also my part in the invetro process and am due to undergo invetro this October and would be happy to share my experiences thusfar.

Julie (wife to Mark 24 w/CF)
 

Emily65Roses

New member
If you have any info to share, I'd love it. I'd really appreciate it. Thanks. <img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
I can share what we have gone through thusfar, email me at division902@hotmail.com and I will email it to you-it's in a word document but I am thinking about starting a webpage, or asking hollycatherine if she wants to add it to hers (im not that computer savvy).


Julie
 

anonymous

New member
This is always a debate on this site and I rarely say anything. We did take the 'gamble' after having a son with CF and according to some 'lost' when we had a daughter that too had CF. But we really won because we have a beautiful daughter who is wonderful and I truelly feel like our family and my life would not have been complete without her gracing us with her prescence in our lives. I've never regreted our decision of course I regret she has CF. But God will use it for His glory someday somehow.
Just my 2 cents. Just remember its YOUR decision no one elses.
 

anonymous

New member
Hi,

Not to be a downer - however - one thing you may also wish to consider when deciding on having a 2nd child is how you will handle being torn between home and hospital should your CF child require hospitalization. If you have loads of family support and don't work, this may not be an issue, but it can be for people who don't have family living nearby.

Best of luck in your decision!
 

anonymous

New member
My husband has a child with CF from a previous marriage, so I knew when I was pregnant with our daughter their was potential for a problem. I was very optamistic my lab results would prove me not to be a carrier, but I was wrong. Thankfully, the amnio showed our daugher to be only a carrier of my husbands gene. 3 years later and I'm pregnant again. This was not planned. I was actively taking birth control pills and my husband and I had both agreed we did not want to risk having a baby with CF, but here I am, 18 weeks pregnant. I had my amnio on 3/22 and I'm still waiting the results. However, an echogenic bowel was noted during my L2 u/s which is a marker for CF.
Now, this is my thought on this topic; while it is a very personal decision to choose to have another baby knowing your odds, I don't feel anyone has the right to say your being reckless. Life is life, I'd rather be here than not. No, I don't have CF, but I do have a step-son with CF and I know he enjoys his life to the fullest. He plays sports, has tons of friends, and he is seriously special, I'm not just saying that because I am his step mom or because he has CF. He is special. He is so smart and witty and funny and he has so much to offer. Our family would be missing a lot without him. We are all greatful for the time we have, there are no guarantees in life. I have worked in law enforcement for 6 years and let me tell you a few things about wasted lives. Have you any idea what your odds are of having a child that will someday become a criminal? Let me tell you they are good. The drug problems in this country are unbelieveable. I would say any average child these days has about a %50 chance of becoming an addict, have you ever seen a child addicted to heroin? That is sad. Our jails across America are full of criminals, rapist, murderers, armed robbers, child molesters, stalkers and much much more. Most parents today are afraid to let their children out of their sight since the Jessica Lumberg case, everyone is scared to death of their neighbors. My point is that if you think parents whom know they have a potential for having a child that will not live an enriched socially acceptable life should not have them then you better pass this along to alot more people than just this little www.cysticfibrosis.com forum because most of our chances are bad. Love is the important thing in life. I could live without a lot of stuff, and I could live with being faced with a potentially fatal disease but I could not live without love. If you want to spread the word that certain people should not have children then go to the projects and poverty stricken neighborhoods and spread it. From what I have read of the parents on this board they love and cherish their children, they provide them with excellent care and if they are willing to give this same care to another child then god bless them and I wish their were more responsible parents like that in the world. Reckless is having a baby and throwing it in a trashcan.
Sorry, this just got to me. Could be the pregnancy hormones. I just know that I love this little boy that is growing within me and I will do the best job I can do to make sure he enjoys his life, if it were my choice he would be perfectly healthy, graduate with honors from Harvard University, marry a lovely lady, have precious grand children for me. But who has this guarantee in life? Noone does. Life is what we make of it. And I will instill that in my son. Healthy or not, were all lucky to be here.
And the idea that only the person with CF suffers with the disease is wrong, very wrong. My 38 year old husband who has spent 18 years in the Marine Corp and a big part of that as a drill instructor can appear completely unshaken in most situations that bring me to tears. But you so much as begin talking about his son and the struggles he goes through and this man turns to mush. I have seen his eyes begin to water when he is explaining to a family member that his son is in the hospital again. The parents of these children do suffer, and they will be the ones to deal with the pain if their beloved child is taken from them too soon. This is a difficult decision to make and it deserves careful consideration but it is not reckless.
Jennifer
 

anonymous

New member
I want another child so badly, but I dont dare talk to anyone about it including my husband we have one 3year old with cf ,my husband dosnt want to chance it. so I will go on with my life grieving for what could be. I realize this may sound crazy but it feels like a loss when you know that there will be no other children.
 

anonymous

New member
Jennifer, you could not have said it better. I lost my daughter October 23'rd 2004 and I could not imagine not having had her in my life. She enjoyed life so much. What a great person you seem to be.
 

WinAce

New member
Once again:

<b>(1)</b> Yes, people do have a right to say you're being reckless if you intentionally have a child knowing, in advance, that it'll come down with a (likely fatal) illness and (if not) something that will haunt them for as long as they live, adding an inordinate amount of issues to everything from employment prospects to personal relationships. 1/4 is worse odds than Russian Roulette with a 6-shooter, and I can hardly imagine anyone here defending playing <i>that</i> game with your offsprings' lives. Even if you merely pointed it at their leg, instead of their brain (and with CF, the latter is as probable as not).

<b>(2)</b> Yes, this would be as reckless if you did it with a 1/4 chance of childhood leukemia, Tay-Sachs, or any other highly dangerous and life-compromising illness. For other things that run in the family, such as a 1/3 chance of adult-onset breast cancer, there's obviously a sliding scale of black-to-grey (and make no mistake, there are grave responsibilities inherent in <i>any</i> decision to introduce more thinking, feeling humans into the world), but the ethical issues involved are considerably less serious. All adults will eventually succumb to illness of one sort or another, so unless it's a disproportionately high risk, almost every parent is on equal moral footing by default.

<b>(3)</b> You <i>can't</i> know if it's better for any particular person to be stuck with a disability. On the other hand... Judging from opinion polls, like "Would you appreciate cancer?" (which, as I recall, was something like 99% saying "No"), and the likely fact that, if you were offered a cure, you'd take it, the argument that it's as good to be ill as it is to be healthy is transparently false.

<b>(4)</b> No, this doesn't mean existing people with CF are worthless, can't enjoy their lives, blah blah. Just that recklessly endangering a future child's health, when you're aware of the risk--it doesn't just hit you out of the blue--and capable of averting it, is... reckless. By the way, the debating technique of bastardizing an opponent's position while ignoring his actual argument is known as the <a href="http://www.nizkor.org/features/fallacies/straw-man.html">strawman fallacy</a>.

<b>(5)</b> The belief that people are born with crippling disabilities to glorify invisible beings who, if they were as righteous described, would neither need nor want such "glory"--or worse, that it's a good thing to introduce more cripples into the world rather than healthy kids, because said beings would approve--utterly disgusts me. To make that--permanent and unchangeable--decision for your kids, who very well may not share your faith or appreciate their dying bodies bringing Jesus glory, appears sick on a number of nauseating levels.

<b>(6)</b> There are lots and lots of special-needs kids--including those with CF who've had their own parents die--who could stand to be adopted. If you really don't care about getting a kid with all that baggage, why not go for an existing one? (This obviously wouldn't apply to those parents who can't adopt, but it's something to think about.) Heck, why wouldn't God approve of that even more?

<b>(7)</b> Yes, I feel <i>very</i> strongly about this, and if I can ensure one <i>single</i> child is born without CF--without an automatic predisposition to unemployment, endless needles and PICC lines from childhood on, feeling the gurgling and drowning-like sensation of blood oozing in the lungs, eventual organ failure and transplant--because their parents came to their senses, and used IVF or adoption agencies instead of taking the risk (for example), I'll be very, very satisfied.
 

anonymous

New member
WinAce, are you aware that there is a 3-4% chance of EVERY pregnancy resulting in some sort of defect? I don't think any of us are looking for the "perfect" child. I would guess that your parents are very grateful to have you in their lives, and that your friends and family would wish you born regardless of any illness you have.
 

WinAce

New member
<blockquote>Quote
<hr><i>Originally posted by: <b>Anonymous</b></i>
WinAce, are you aware that there is a 3-4% chance of EVERY pregnancy resulting in some sort of defect?<hr></blockquote>

And did you know that "some" sort of defect--at a prevalence of 3-4%--is quite a bit less morally challenging than Cystic fibrosis (which is not "some" defect, but a pretty darn bad one) at 25% <b>PLUS</b> that original, generic risk? (Pregnancy as a whole is not a walk in the park, and IMO, far too few of them are entered into responsibly.)

For the rest, refer to my point <b>(4)</b> above.
 

NoDayButToday

New member
What does "some sort of dissability" mean exactly? I had an English teacher who had misshapen fingers (though they were fully functional), and she lives a 100% normal life except for the sole fact she has misshapen fingers. If that is included in your percentage, I think that percentage does not really apply here as CF and other more severe conditions and disablities are MUCH MUCH more serious than that, and comparing a finger deformity to having CF is almost laughable.

Here's my opinion on this. I haven't had an easy time with CF. If you can aford inv-vitro with PGD, I think you should do it. Usually, CF doesn't hit a kid hard while they are younger, and when a child is 3 or 4 it is NOT indicative of what CF will be like for them as time goes on. Even if your child is doing well now, that isn't a guarantee of anything. I also think that its obvious and goes without saying that a child is loved by their parents regardless of their health so its a rather dumb argumentative point.




Also, don't interpret this as looking down on people who had more children without doing in-virto, adoption or PG. I just feel this way because of my belief that I woudn't wish CF on anyone, not even my worst enemy
 

anonymous

New member
WinAce, I don't mean to be offensive, but this is probably going to come out that way. You seem to be very narrow minded and you appear to be the type of person who believes he is right under all circumstances and nothing else matters but what you think and believe, oh plus, you have answers to everything and nobody else can ever be right if they don't agree with you. I usually welcome debates on this site, but not as sensitive issues like this.

And another problem I have with your posts on this topic, you aren't a woman. Now, I am not saying that the initial poster didn't welcome responses from both sexes, I don't know and I am not her and I don't favor one sex over the other. But I can say from my personal stance, you NEVER have and NEVER will know what it is like to be pregnant, get that morning sickness and laugh or cry tears of joy, feel a baby move around in your stomach, after 9 long months of waiting finally be able to deliver that baby, you will never know what it feels to breastfeed and be able to feel that bond a breastfeeding mother feels. So your rude and negative posts on this particular topic don't weigh too heavily with me, and I hope they don't with the initial poster either. Therefore, I don't really feel like ou have a right to post some of the things that you did, maybe it's just me.

A child is a child, regardless of what "problems" they may have and they need love, attention and affection. This is a very personal choice that two people are going to have to make, and although there are now technologically advanced ways (PGD) that people can ideally "prevent" these genetic things from being passed on-they can run starting at $15,000 all the way up to $40,000 plus. If you want to shell out this money to those couples, then maybe you have a right to say something. But until then, please don't be so judgemental.

Also, I have never been able to figure out, do you have CF? Does a child of yours have CF? Does a lover have CF? I am just curious as to who you are in relation to CF?????


Julie (wife to Mark 24 w/CF)
 

WinAce

New member
Relax, I've not been offended by <i>far</i> worse. I don't expect to change your mind. As I said, if something I write eventually contributes to one more needy child being adopted, or a healthy child being born and enjoying life to the fullest, <i>rather</i> than some parents taking reckless chances and creating yet another deathly ill kid on an ego trip, it would have been worth a lot more than someone on a message board calling me arrogant.

I rarely say this so forcefully, but I <i>am</i> right, and believe it to be self-evident. If it's "narrow-minded" to want to give a child every advantage in life, as opposed to crippling them from the get-go, so be it; in the case of (what are likely gonna be) terminally debilitating illnesses and children, "open-mindedness" seems like a codeword for "a mind so open, its brain fell out."

I don't see how gender would affect this, one iota. Are you saying that if a woman really, really wants kids, the ethical issues of taking grave risks with their lives vanish into thin air? (Thought experiment: there's a really cool hypothetical drug that, while the best thing ever to experience while pregnant, causes eventually deadly congenital heart defects in 1/4 of the embryos that are exposed to it. Is it rude and negative to condemn its use unless you're a woman?)

It's not obligatory to have kids, regardless of what primate urges might suggest, you know. Unlike the other primates, we're not slaves to them. And if someone feels they <i>must</i> have kids, there are other ways to get them, such as IVF, surrogate motherhood, or adoption, that needn't be the equivalent of Russian Roulette.

Why should anyone subsidize people's reproductive urges, on an already overcrowded planet? (I hope you realize saying "It's too expensive!" is practically <i>admitting</i> you'd rather take a 1/4 chance of having a gravely ill child, than take the trouble to find an alternative way of getting a healthy child.)

Of course, there aren't any laws against irresponsible conception...

Yes, I have CF, and what I wrote would hold just as true were I anyone else.
 
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