I just have to see what some other CFers think about this. I've noticed alot of people on this site mention that thay are carriers, have kids w/ cf, ect. and they are planning pregnancies. Dose anyone else think that this is irrespondsible? I'm not setting up a platform for an abortion debate here. I can't imaging ever intentionally bringing a life into this world knowing that they will have to suffer the same things I have gone through. I know all parents agree that they love their children, that they are the light of their live and they can't imagine life without them. But you are making a choice to let a child have a fatal illness! I think parents w/o CF need to consider the pain a CF patient feels. Maybe some of them should consider the quality of life of that possible child rather than their desire to have a baby. On an even more personal note, if my parents had consciously decided to have me, knowing I would have CF, I would have even more emotional issues to deal with than I have now. But they couldn't test back then. They can now.
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CF respondsibility
- Thread starter anonymous
- Start date
Not all Cf'ers feel the way that you do. I have never felt sorry for myself about CF. I do not let CF run my life. I run my life. I have a WONDERFUL life and I cannot imagine that I would be any happier if I did not have CF. I have never not done something because of this disease. I may be an extremely lucky patient, but with CF you don't know. You may have a child that has nothing but problems, and you may have a child like me. I am 42 years old. I am so sorry that you feel that way about CF. Do you have any other family?
My two cents on this....I too have never been embarassed about my disease or let it run my life. I am a very happy person and i think that i'm in a way a better stronger person because of the CF. It has taught me lessons that most healthy people dont get to lean or realize. How ever i do agree to some point with the person who thinks its irresponsible to have children knowing that CF is a possibility. I myself have decieded that i will not have children under any circumstance. My husband also agreed that my decison was responsible. I in no way am forcing my views on other people but as i've been told many times that if i'm physically able to get pregnate that there is alway adoption. Not i my eyes. I have a very large family which include 4 younger siblings. Each time my mother told me she was pregnate i prayed to god that they would not have CF and i was mad that she was willing to take the chance.. I now how hard it can be at time to live with disease. And how much hurt it causes. And i dont want to see my sisters or brothers having to experince the illness as i do. As my siblings grew into school year they were teased because other kids were made aware of my disease they used to say mean hatefull things to them. I as a big sister would have to see them come off the bus in tears because so kid said i had aids or i was going to die. And when it came time that i was being hosptialized often i seen how scared they were and how they worried so much. They are now into their teen years and they still deal with the fear of me being sick. I also have young nieces and nephews i deal with similar complictions. I can't stand to see the fear in there eyes let alone a child of my own. my other point is that if i were to have a child my husband and i would have to explain why mommy aint at home or why mommy cant play with me all the time. And last but not least god forbid i would die i would leave my husband to raise a child by himself. I did not make this decisoion on a whim i looked back at the year and i've even looked into the future and for me it not morally right for me to have a child (biological or adoptive). I know that many people may be put off by what i just said and my be rather upset by my comments. However i ask why is it so wrong if a women healthy or not dont want to have children? Cause i see it first had when i say i dont want children women look at me as if i'm defective. Again these are my beliefs and i dont expect to convert people to my beliefs. I believe we all do what we think is right and thats just fine but please just remember just the fact that u dont belive the same u shouldn't judge the other personHappiness and good health to everyone
Hello,I agree that i hate having CF and wouldn't want another person to go through it, but i don't think that people who are carriers should let it stop them. At least they will know when the child is born to have it tested right away and can begin treatment immediately. This topic is a hot one for me as i have 2 sisters who are planning to have children very soon and they may be carriers, my one sister says that she would adopt if she is a carrier and the other is unsure of whether it would stop her. Personally i would be heart broken to see one of them have a child with CF, not only because of the child having it, but because of what they would have to go through to keep that child alive. It is a BIG decision for carriers to make. I am glad i do not have to make that decision and hope to never have to. I have a wonderful life but also have known many people with CF who have had a short one, many of my child hood CF friends have passed away now, and i am only 18. So i just think that it is hard on everyone, not just the CFer. The CFer wouldn't know another way of living, that is how i look at my CF, and if they see something that other people are doing that they want to do then why the hell can't they. I just haven't found anything that i have seen other people doing that i want to do, other than laugh without almost hacking out an entire lung. But i think that is a minor thing compared to other things i have seen other people with genetic disorders go through!Just my 2 bits, not trying to argue just expressing how i feel!Thank you for giving me the chance to yabble about this!Love Julie
Who in this world is ever guanteed a perfectly healthy baby? Just last week a friend of the family, with no genetic conditions at all, had a baby with heart problems. It didn't show up on any test of anykind. Now the baby is in nicu waiting for open heart surgery. The parents can't even hold him because it stimulates him too much. All this said to point out that there are no promises of good health to anyone. Every day our "healthy" kids take a chance of being paralized just by playing on the trampoline or crossing the street. Should we not let them take these chances? CF sucks, but there are no absolutes for ANYONE.
I am a mom with CF. I dont think it is irresponsible in any way to have children knowing you are a carrier. Just because 2 parents are carriers...doesnt necessarily mean any child will have CF. I am 30 and was diagnosed just shortly after birth. I couldnt imagine my life without CF...I know...seems strange. But I can honestly say that I am a very strong person because of this disease. I have to admit I was scared knowing my child could have had the disease...(although my husband was not tested). But, I also knew how to "cope" with it and knew I could manage no matter what happened. Now that I am a mother ....I could not imagine my life without my daughter. She has made me even stronger than I was before. I believe that having kids is a personal decision...no matter whether you are a CF carrier or not. I am saying that it should not affect the decision...sure is going to be a little harder if a child is born with CF...but is possible. I am one of 3 kids....I also have a brother with CF. My mom is a very strong woman..and I commend her for it....but I know she wouldnt change it for anything...because it has made us all who we are today. None of us know when we are going to get sick...or die. Accidents happen every day....we shouldnt live our lives being frightened of what "could" happen. Live one day at a time...be thankful for what we have. I use to ask why me...but I dont ask that any more...I just know to fight it with all I have...and I feel I'm living a great life!Dea
to the first post, I am just wondering, if your parents were able to have testing during their pregnancy with you and they found out that you had CF , would you have preferred that they abort you? Is your life THAT terrible that you would have chosen not to live it? Most of the people who I know who have CF or other problems would prefer to live. I am sympathetic to the problems of living with this illness, my daughter lives with CF everyday and I know one day her disease will progress. But I do not think that she will ever look at us and say that she wished she was aborted or never conceived at all.Just what i thinkAndrea
I have CF and love my life to no end. My parents did not know they were carriers, but I would not be upset with then AT ALL if they had known. In fact I would be greatful that they still gave me a chance to live. When I went to college I saw that many of my friends and dorm mates had horrible families. My old roomate had an alcoholic father and a disconnected mother. My new roomate has a verbally abusive father. Other students dislike their parents or have parents who never call. I realized that I was blessed with such a wonderful family who loved and supported me to no end. I realized that a healthy person can have a healthy baby, but that doesn't make them good parents. Being a good parent is so much more important than having a good set of genes. To me a person who has a baby and crushes their little spirit through abuse is irresponsible, not a parent who just so happens to pass on a defective gene. A father who has a child with a woman, but doesn't bother to stick around and raise the baby is irresponsible, not a family who has a baby with CF and does everything possible to keep that baby healthy and alive. A parent who crushes a childs dream by not believing in them is irresponsible, not a parent who dreams with their CF child of all the goals he/she is going to accomplish despite the disease. Emily (aka Emm) 19 yrs/CF
Um, wow, I am impressed and agree with most of what people have said to the first post. I would like to who could possibly think that if you chose not have a child because both parents were carriers, or worse, to abort your child because he/she had CF(!), that somehow you were doing anyone a favor, that a kid without CF would be perfect. CF is just one of a million problems any person can have. I am sure there are people out there who are psyched that only one parent is a carrier, and then give birth to a down syndrome baby, or some situation like that. The fact is that the world is what it is because of the people in this world. I have learned more than a lot of people I know because of my CF, and because of it I am really grateful that I am not the type of person who will cry over spilt milk, or feel sorry for myself. Because of it I feel like I can deal with anything, and personally I think a person like me makes the world a better place, not a person who thinks we should only conceive and give birth to seemingly perfect children just so they wont suffer. Everyone knows that those who have suffered are the wisest and most compassionate, it is the oldest cliche in the book for people to say that they have learned from the terrible things that have happened to them. Also, to that last post...even if both parents are carriers there is only a 25% chance that the kid will have cf...so I dont know what you were talking about. Do a punnet square.
To person who said that if both parents are carriers then the child will have CF. I first want to say that you are soooo wrong and you should be careful when you put out wrong stats. Second I want to say that I think you should get some help...I mean that sincerely because it sounds like you have some bitterness about the disease. It can be tough on anyone to have a genetic disease, but that doesn't mean you should take it out on other people who are in the same boat and are here to support you!
My parents did not know they carried the CF gene before I was diagnosed, and I hope that if they'd known they would still have had me. My life sucks a lot of the time (especially lately), but it is so good a lot of the time, and I am glad that I exist. I wouldn't be me without cf, and yes, I'm thankful for it (that doesn't mean I don't also think it sucks . . . it may seem contradictory, but I've learned that I can appreciate the person this disease has made me into and still be angry with it)That said, I think that if my parents had had a choice, they would not have chosen to have a child with CF. They bear a lot of guilt and in some ways have a much harder time dealing with my CF than me. I was definitely a very hard kid to raise. My younger brother was adopted, and while my parents claim they did not make this decision because they didn't want to have another kid with cf, I don't really believe them. The worst part, for me, about having CF hasn't been the disease itself but the way my parents deal with it, in other words, not dealing with it. My point is . . . I just think that if two carriers are having kids they need to be really awesome parents, who know they're capable of raising a child who could be seriously ill. Not only that, but the parents have to be prepared to deal with a potentially bitter kid in a lot of pain who says "Why did you even have me?" They have to be able to deal with a potentially enormous amount of guilt. If parents are strong and capable enough to help a kid with CF and to watch them go through pain, then there is no reason why they shouldn't conceive. A pwcf's quality of life is affected by the mutation in their genes, but it is also really determined by the way the environment responds to this. I think if two carriers have a chance of having a kid that they cannot support emotionally or financially, I think they should think twice about that. Even though my parents did a pretty awful job dealing with me and my cf, there were so many things they did for me that families in different situations would never have been able to do - stay home with me when I was sick, get me good health care, send me to therapy when I grew up and had to deal emotionally with so much stuff. Is this making sense? I hope so. What I'm basically trying to say is that people should want to give their children the best life possible, and that really has much much less to do with genetics than parenting capabilities. love, <i> scarlett </i>
!!!! I think everyone here is happy to be alive even though they have CF! Isn't that the whole point? When it is put that way, it all just seems rather personal. Anyone who would prefer to have never been born because of their problems has other issues having nothing to do with CF.
.....so she lays there in my arms, eyes wide open and glazed over. I can feel her labored breathing, rapid shallow breaths barely audible above the hiss of the oxygen tube. Machines beep constantly around her, machines that are responsible for keeping her alive. This one pumps bacteria killing antibioitics into her, that one pumps life giving nutrients into her because she long ago lost the ability to keep up with her body's demand for vitamins and minerals. She also has a tube sticking out of her stomach to help with her caloric intake. Another device implanted beneath the skin to facilitate the frequent iv's. Earlier this week she had to have a chest tube put in, essentially a vacuum line, to keep her right lung from collapsing (again). She's been on the transplant list for about 8 months now. It's too late for that now, even if she were to get transplanted today, they couldn't do it because she's not well enough to endure the additional trauma to her body. My husband has been putting in lots overtime to compensate for my lost income. I've been at my daughter's bedside all day, every day for the last 2 months. She has good days and bad days, though lately just mostly bad days. I think that it's easier for him to put in extra time at work because he can't seem to cope with our daughters illness very well... or at all for that matter. He stays home and takes care of things while I'm up here. I call him at night and I can hear the slurring in his speech, the occasional emotional outburst, the crying. I've told him he's got to spend as much time as he can up here, his daughter needs him. "Momma, this tube is hurting me again..." "That's okay honey, mommy will take care of that..." that's my cue to hit the button on yet another pump. I push the button and a predetermined amount of morphine is administered through her iv line. The machine times out set doses so that you cannot overdose, and it keeps track of how much and how often you use it. This is nice because it means that I don't have to page a nurse everytime Emily's pain becomes unmanagable. Sleep is already hard to come by without having unnecessary pain keep her awake. The nurses, doctors and staff couldn't be nicer to me. They remind me everyday that if Em or I need anything, all we have to do is holler. Some have gone out of their way to do nice things like rent movies or bring games from home. Sometimes the nicest thing is when they simply take the time to talk. Please God, don't let this happen because I'm thinking it.. but I don't think she'll make it to Christmas. The doctors have done all they can do, short of a miracle. I can tell they think the same way as I do, you can read it in their demeanor. Conversations about potential therapies and options have gone from being optimistic to a wait and see kind of resignation. Each step of the way, one less option, a little less hope, til your finally at the point where you're just begging God for a reason to hope. And if hope isn't in the cards, then I pray for a quick and painless death. I'm sobbing uncontrollably now... what if? what if? what if? I cannot tell you what it feels like to be responsible for bringing this on her. Make no mistake, that's what it feels like. The terrible guilt, oh the guilt... Why God, oh why would you do this to a 4 year old? What kind of God lets this happen?! "Why are you crying momma?" "Oh honey, momma's just happy to be able to hold you, is all..." "...don't you worry momma, everything's gonna be okay..." Imagine going through this, knowing you could've prevented it (remember, you rolled the dice on this one) The guilt stays with you forever.
We did not know that we were carriers of CF when we had our daughter. She wasn't even diagnosed until she was 9 months old. We all need to make our decisions about having more children or not, knowing that CF is an illness that CAN cause our children a lot of suffering. If we choose to "roll the dice" we have to know that we can handle the guilt if our child suffers. There is responsiblity here, We must be responsible for our kids, but we are not responsible for the genes we got anymore than whoever passed this recessive trait on to us is. But remember that there is no gaurantee that they wouldn't suffer if we were not carriers of CF. They could have anything else that is recessive or something that is not genetic at all.I am sorry if the person who posted that story is really going through this with a four year old. My heart goes out to you and to everyone who is dealing with CF. Also, would people sign their posts? it is hard to respond to individual posts without a name.Andrea
I didn't start this post to entertain rhetorical questions like "aren't you glad your parents had you?" I started it to see what others thought about the idea of respondsibility. If a person with AIDS was going around having sex with several people, some protected, some not, society would not only call that irrespondsible, but throw that person in jail. Having a child with CF is not a crime, and I hope that all children are born into loving families. But I think that potential parents need to consider ALL the factors, just as they would move to a bigger house, or quit smoking, this is another factor that MUST be delt with. I just want people to think about this and realize that there are more important things sometimes than their drive to "have a baby of their own."
I don't think parenting skills have anything to do with CF respondsibility. Parents could be the most dedicated, pure soles in the world, but that doesn't change the fact that they have a respondsibility. What scares me is the number of people who know that CF is in their family and don't bother to further educate themselves on their own condition if they are a carrier or their spouse's condition. It's like they think that if they don't test, they are less likley to have to deal with it. I remember reading a post a few weeks ago where a woman was having a hard time convincing her sister to have her infant daughter tested. I want to know what rational is used in that situation. Why would you delay testing and potentially cause harm to your child if you know it's a real possibility. Just because someone doesn't show symptoms doesn't mean they don't need treatment. To use the AIDS analogy again, if you've slept with someone who you find out later has AIDS, not getting tested yourself isn't goint to change the results.I think there is a HUGE amount of fear in getting tested. I was diagnosed w/ CF at 5 weeks. My older half-sister and her husband were both tested to see if they were carriers befor they had children. She is a carrier, he is not. They had already discussed adoption if the results were different and were prepared to deal with what they had to. In fact, she had explained that there was CF in the family before they married and what that ment if they planned to have children. They overcame their fears because they felt their respondsibility.