My wife and I just found out a couple weeks ago that we are both carriers for the delta F508 mutation, meaning that if we get pregnant, we have a 25% chance of having a child with CF. We are trying to decide what to do... should we just go for it, and accept that we have a chance of having a child with CF? Should we do in vitro fertilization and screen for CF? Is there another option that we should be considering.We really have no idea what we should do. We are afraid that if we just go for it, and our child ends up with CF, our child get angry with us when they find out that we knew we were carriers for CF, and we decided to just go for it.It sounds like if we do in vitro, they essentially create a few embryos, and after they have divided into 8 cells, they take a cell out to screen for CF, and they get rid of all the affected embryos. Is this considered abortion?We both value life, and would be happy to have a baby whether they have CF or not. We have both made careers out of helping sick people, (my wife is a PNP and I have actually spent time in a lab developing gene therapies for CF) and we know we would be happy to raise a child with CF. At any rate, we have no idea what route we should go, or what else we should be considering. Any advice/ input would be greatly appreciated!Thanks,Chris
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Seeking Advice/Input
- Thread starter ChrisK
- Start date
I think it's important to consider that this decision doesn't affect just you and your wife. You may be perfectly capable and happy to raise a child with CF, but those are your feelings and not those of your potential child. As you stated, your child may be angry at your throwing caution to the wind and going for it. You may feel guilty if your child has a lot of hardship because of the disease.
I'll use myself as an example. My parents were unaware that they were carriers and I have been extremely lucky to not have many health issues. That's not to say that my life has been perfect and it's pretty much a given that I will have a decline in my health status as I age.
I am not a parent, nor do I plan on ever being one, but I can imagine how heart-breaking it must be to watch your child's health decline, or sit in the house for hours doing treatments while other kids play outside. There's just so many variables that, in my mind, outweigh the natural fertilization process. I would play it safe and go with in vitro or even consider adoption. That's just my $.02.
Whatever you decide, I wish you luck and happiness.
I'll use myself as an example. My parents were unaware that they were carriers and I have been extremely lucky to not have many health issues. That's not to say that my life has been perfect and it's pretty much a given that I will have a decline in my health status as I age.
I am not a parent, nor do I plan on ever being one, but I can imagine how heart-breaking it must be to watch your child's health decline, or sit in the house for hours doing treatments while other kids play outside. There's just so many variables that, in my mind, outweigh the natural fertilization process. I would play it safe and go with in vitro or even consider adoption. That's just my $.02.
Whatever you decide, I wish you luck and happiness.
I would do IVF, but I don't consider destroying embryos as abortion, (I don't think it's abortion until the embryo implants into the uterus and divides into the placenta and fetus), I'm sure many people feel differently - do you belong to a church? If so, maybe you could consult your minister/pastor/priest/etc regarding the abortion question.
Having a child with CF is a gamble - My health has been very good and I lived a normal life, but I still get sick and have to do lots of breathing treatments and am not sure how long I will live. Others are not as lucky. Regardless, though, you can be pretty much be guaranteed that, if you have a child with CF, CF will be a fairly large part of their life. But they can still live a very full, rich life. If I saw destroying embryos as abortion I'm not sure what I would do if I were in your shoes. It would be a tough decision.
Having a child with CF is a gamble - My health has been very good and I lived a normal life, but I still get sick and have to do lots of breathing treatments and am not sure how long I will live. Others are not as lucky. Regardless, though, you can be pretty much be guaranteed that, if you have a child with CF, CF will be a fairly large part of their life. But they can still live a very full, rich life. If I saw destroying embryos as abortion I'm not sure what I would do if I were in your shoes. It would be a tough decision.
Thank you all for your input. It is all very helpful.
Bill, my wife and I understand that there are are always new treatment options emerging that may increase the quality of life of people with CF. I just don't think anyone knows if there will be a complete "cure" for every aspect of CF in the near future. If we knew for sure there would be, it would be a much easier decision.
Jonathan and Kristen, thank you so much for sharing your input as well. We have definitely taken what you have said to heart. My wife and I were especially interested in hearing from people with CF, or have raised someone with CF, so they could give us their perspective on what they would do in our shoes.
We are meeting with a genetic counselor in a couple days, so hopefully she has some good ideas too. If anyone else has any input, we are still interested in hearing it.
Thank you!!!
Bill, my wife and I understand that there are are always new treatment options emerging that may increase the quality of life of people with CF. I just don't think anyone knows if there will be a complete "cure" for every aspect of CF in the near future. If we knew for sure there would be, it would be a much easier decision.
Jonathan and Kristen, thank you so much for sharing your input as well. We have definitely taken what you have said to heart. My wife and I were especially interested in hearing from people with CF, or have raised someone with CF, so they could give us their perspective on what they would do in our shoes.
We are meeting with a genetic counselor in a couple days, so hopefully she has some good ideas too. If anyone else has any input, we are still interested in hearing it.
Thank you!!!
midwestmomof5
New member
I am a mommy of 5 kids. I was notified that i am a carrier of cf with my 3 year old and he was born fine after many aultrsounds and alot of worring. However I became pregnant with my baby girl Emily who was born with miconiem illius. She needed surgery at 3 days old. She has two copies od delta 508. Shes been in the hospital with a few lung infections but overall is a healthy beautiful baby. She is breastfeed with 2 fortified bottles of breastmilk a day other than that it is full nursing. I credit this to her health. I also do every thing with all my heart when it comes to her treatments. Her paternity was in question and the posibility of 2 fathers, which I know may seem wrong for me to even mention this but I look at this double copy of this being present as a way of destiny saying you cant change me. I didnt know her father was a carrier of the same mutation as me much less of any mutation. I wouldnt change anything if I couldve changed the past. She is so happy hardly ever crys. Brings joy to all who know her and meet her. I say let GOD be the planner of your life. My baby girl wouldnt be here or be the same person If I had made arrangements of any kind to know about her before she was born. Let GOD be the planner of your life. Also I am a single mother and I have my moments where I wish I had help but you can do this together for your child or children your already ahead of the game. God bless you
I think it's okay to let God be the planner, along with assistance from the medical profession. In my opinion God (or whoever you might believe in) gave us the tools to help with these kinds of decisions. Burying heads in the sand does not have to be God's only way.Just my two cents.
Originally posted by: Fran
I think it's okay to let God be the planner, along with assistance from the medical profession.
In my opinion God (or whoever you might believe in) gave us the tools to help with these kinds of decisions. Burying heads in the sand does not have to be God's only way.
Just my two cents.
I agree with this. I don't understand why people see using medical methods to conceive a child as interfering with God, when they don't see using medical methods to save a life as interfering with God. In both cases, I think we are using the tools God provided to us.
I think it's okay to let God be the planner, along with assistance from the medical profession.
In my opinion God (or whoever you might believe in) gave us the tools to help with these kinds of decisions. Burying heads in the sand does not have to be God's only way.
Just my two cents.
I agree with this. I don't understand why people see using medical methods to conceive a child as interfering with God, when they don't see using medical methods to save a life as interfering with God. In both cases, I think we are using the tools God provided to us.
imported_Momto2
New member
Hard question. As someone already mentioned, you should consider the ramifications of your potential child knowing you could have prevented their illness. Also, how will you feel when the child you love desperately is ill and steps could have been taken? I would not consider embryo screening abortion, but that is my opinion only. CF has made me a strong person, but I would NOT want to watch my daughters suffer from it. And yes, with all the newfangled and wonderful treatments that often are only effective on a portion of the CF population, there is still a lot of suffering going on. My husband and I adopted, but that was a slightly different choice on our part- I did not want to go through a pregnancy that might ultimately shorten my time with said family. If I were in your shoes, I think I would screen. Good luck, and god bless no matter what your choice.
Hi Chris. I am actually in a very similar situation, only we are thinking about baby #2. My husband and I both found that we were carriers while I was pregnant with our son. We were both tested after my doctor saw signs that my baby had a blocked bowel on the ultrasound. My son is now 5 months old and he does have cf. Having a child with cf definitely requires more time and planning. I have decided to stay home in order to try to keep him from day care germs. We spend one hour every morning and one hour each night doing therapy. He also has pretty bad reflux and has explosive diapers pretty regularly. There is also an extra financial burden (medications, doctors appointments, etc.) All that being said, he is still just a regular lovable baby.
I think that the only right decision is the one that you are comfortable with. I don't think that there is anything wrong with either option. If you do not have any ethical or religious concerns with invitro, that is probably the best option for you. However, if you have ethical or religious concerns, then there is nothing wrong with having a baby naturally. It sounds like you understand what it takes to raise a cf child and are willing to if needed, which is so important. Another thing to consider...even if you have invitro, there are still a million other things that could happen. Babies are born everyday with really bad diseases/conditions. And even if they are born healthy, they could get cancer or juvenile diabetes or something worse. No baby/child/person is perfect, that's just a fact of life. However, I completely understand that you would want to eliminate the possibility of cf since you can. Either way, it really has to be what you are comfortable.
I think that the only right decision is the one that you are comfortable with. I don't think that there is anything wrong with either option. If you do not have any ethical or religious concerns with invitro, that is probably the best option for you. However, if you have ethical or religious concerns, then there is nothing wrong with having a baby naturally. It sounds like you understand what it takes to raise a cf child and are willing to if needed, which is so important. Another thing to consider...even if you have invitro, there are still a million other things that could happen. Babies are born everyday with really bad diseases/conditions. And even if they are born healthy, they could get cancer or juvenile diabetes or something worse. No baby/child/person is perfect, that's just a fact of life. However, I completely understand that you would want to eliminate the possibility of cf since you can. Either way, it really has to be what you are comfortable.
TheAmazingBD
New member
I was adopted at 3 weeks old and I am gracious for my birthmother giving me life but she had no idea she and my birthfather were carriers.
I don't think it is right to spread a disease we Cfers spend our lives fighting. This chat board is proof that CF is not fun and not something anyone should be playing "god" with. I'm completely dumbfounded by women who are so desperate to have a child when they can't even breathe for themselves.
Adopt. There are plenty of foster children who need loving families. Blood does not make a family. But DNA can be a death sentence.
I don't think it is right to spread a disease we Cfers spend our lives fighting. This chat board is proof that CF is not fun and not something anyone should be playing "god" with. I'm completely dumbfounded by women who are so desperate to have a child when they can't even breathe for themselves.
Adopt. There are plenty of foster children who need loving families. Blood does not make a family. But DNA can be a death sentence.
TheAmazingBD
New member
I have to post again because this topic infuriates me!
HOW CAN ANYONE WHO KNOWS THEY CARRY THE GENE OR HAS CF WILLINGLY BRING A BABY INTO THE WORLD LIKE IT'S OK???? YOU ARE PUNISHING THAT CHILD TO A LIFE OF STRUGGLE!!! YOU HAVE NO FREAKING IDEA WHAT IT FEELS LIKE TO HAVE CF AND YOU HAVE NO IDEA WHAT IT MEANS TO RAISE A CHILD WITH CF! IF YOU KNEW YOU HAD AIDS WOULD YOU RUN AROUND SLEEPING WITH PEOPLE WITHOUT A CONDOM??? THAT IS SOME REAL SELFISH CRUEL ACTIONS. I KNOW PLENTY OF PEOPLE ON THIS BOARD CARRY THE GENE AND HAVE KIDS AND HAVE CF AND HAVE KIDS, BUT I DO NOT NOT UNDERSTAND WHY!!!!! IT IS SO MESSED UP!!
MY FEV'S ARE 108% AND NO WAY ON THIS EARTH WOULD I REPRODUCE MYSELF!!! YET I'M CONSTANTLY READING HOW WOMEN WITH CF HAVE 60, 50, 40% AND THEY ARE REPRODUCING!!!! STOP THE MADNESS! STOP SPREADING THE DISEASE!!! LIFE IS HARD ENOUGH. DON'T MAKE A CHILD SUFFER BECAUSE YOU ARE SELFISH!!! AWWWWWW
HOW CAN ANYONE WHO KNOWS THEY CARRY THE GENE OR HAS CF WILLINGLY BRING A BABY INTO THE WORLD LIKE IT'S OK???? YOU ARE PUNISHING THAT CHILD TO A LIFE OF STRUGGLE!!! YOU HAVE NO FREAKING IDEA WHAT IT FEELS LIKE TO HAVE CF AND YOU HAVE NO IDEA WHAT IT MEANS TO RAISE A CHILD WITH CF! IF YOU KNEW YOU HAD AIDS WOULD YOU RUN AROUND SLEEPING WITH PEOPLE WITHOUT A CONDOM??? THAT IS SOME REAL SELFISH CRUEL ACTIONS. I KNOW PLENTY OF PEOPLE ON THIS BOARD CARRY THE GENE AND HAVE KIDS AND HAVE CF AND HAVE KIDS, BUT I DO NOT NOT UNDERSTAND WHY!!!!! IT IS SO MESSED UP!!
MY FEV'S ARE 108% AND NO WAY ON THIS EARTH WOULD I REPRODUCE MYSELF!!! YET I'M CONSTANTLY READING HOW WOMEN WITH CF HAVE 60, 50, 40% AND THEY ARE REPRODUCING!!!! STOP THE MADNESS! STOP SPREADING THE DISEASE!!! LIFE IS HARD ENOUGH. DON'T MAKE A CHILD SUFFER BECAUSE YOU ARE SELFISH!!! AWWWWWW
L
littlemisssilly
Guest
Well, this thread is no doubt going to get blocked soon.
I just had to respond to the previous comment.
TheAmazingBD, yes, CF is hard but, do I spend my life being all bitter and twisted and blaming everyone else for my existence? No. Do I blame my parents for bringing me into this world? No. You also seem to fail to appreciate that CF women (assuming they have a child with a non-carrier male) do not pass on CF to their children. The child will be a carrier so, yes, there are ethical considerations there. However, to blanket all CF parents as selfish and messed up is just your ignorant opinion. You came on a CF Pregnancy Forum, wrote your rant in capital letters after your original rant got ignored. You must know how much saddness and offence your comments will spark.
Even if my parents had know they were carriers w CF and chose to have me, I dont think I would hold them any ill will. I hate CF but I don't hate my life. Everyday I wish I didn't have CF but at the same time, I would never change me or my life, if that makes sense.
Having a child was an incredibly long and hard decision that my husband and I took very seriously. My son is my world. I, probably like most CF mums here, do have fears about the future in terms of our health and how this will impact my baby boy. I am not naiive enough to ignore the probablity that my CF will adversely impact him in someway, whether it's seeing his mum being hospitalised for IVs, seeing me do physio each day or being too tired to chase him in the park or the awful reality that I may leave my son without a mum. Even now, the thought of dying and never being able to see or hold my precious boy brings me to tears. At the same time, I am a woman who found her soul mate, got married, and with my CF team's blessing, gave birth to our son. We took every step to ensure me and our baby were safe and healthy. My health thankfully, has always been stable, I am diligent with my treatments and exercise. I have now given up my career to be a full time mum and to ensure I stay as healthy as possible for my boy. To call me selfish and mad and 'spreading the disease' is an ignorant and shallow summary of not just me but every woman on this forum and their partners.
Just because having children is not something you would consider, don't tarnish the rest of us with cruel remarks. I have been a member of this forum for years but hardly ever post but your comments offended me so much that I had to respond. Spend some time and read the posts on this forum and you may realise that every woman on here, every family are inspirational. They are inspirational because of the strength and determination of their human spirit... and guess what? In a large part it is CF that gives us that.
I just had to respond to the previous comment.
TheAmazingBD, yes, CF is hard but, do I spend my life being all bitter and twisted and blaming everyone else for my existence? No. Do I blame my parents for bringing me into this world? No. You also seem to fail to appreciate that CF women (assuming they have a child with a non-carrier male) do not pass on CF to their children. The child will be a carrier so, yes, there are ethical considerations there. However, to blanket all CF parents as selfish and messed up is just your ignorant opinion. You came on a CF Pregnancy Forum, wrote your rant in capital letters after your original rant got ignored. You must know how much saddness and offence your comments will spark.
Even if my parents had know they were carriers w CF and chose to have me, I dont think I would hold them any ill will. I hate CF but I don't hate my life. Everyday I wish I didn't have CF but at the same time, I would never change me or my life, if that makes sense.
Having a child was an incredibly long and hard decision that my husband and I took very seriously. My son is my world. I, probably like most CF mums here, do have fears about the future in terms of our health and how this will impact my baby boy. I am not naiive enough to ignore the probablity that my CF will adversely impact him in someway, whether it's seeing his mum being hospitalised for IVs, seeing me do physio each day or being too tired to chase him in the park or the awful reality that I may leave my son without a mum. Even now, the thought of dying and never being able to see or hold my precious boy brings me to tears. At the same time, I am a woman who found her soul mate, got married, and with my CF team's blessing, gave birth to our son. We took every step to ensure me and our baby were safe and healthy. My health thankfully, has always been stable, I am diligent with my treatments and exercise. I have now given up my career to be a full time mum and to ensure I stay as healthy as possible for my boy. To call me selfish and mad and 'spreading the disease' is an ignorant and shallow summary of not just me but every woman on this forum and their partners.
Just because having children is not something you would consider, don't tarnish the rest of us with cruel remarks. I have been a member of this forum for years but hardly ever post but your comments offended me so much that I had to respond. Spend some time and read the posts on this forum and you may realise that every woman on here, every family are inspirational. They are inspirational because of the strength and determination of their human spirit... and guess what? In a large part it is CF that gives us that.
CysticlyFIT
New member
Originally posted by: TheAmazingBD I have to post again because this topic infuriates me! HOW CAN ANYONE WHO KNOWS THEY CARRY THE GENE OR HAS CF WILLINGLY BRING A BABY INTO THE WORLD LIKE IT'S OK???? YOU ARE PUNISHING THAT CHILD TO A LIFE OF STRUGGLE!!! YOU HAVE NO FREAKING IDEA WHAT IT FEELS LIKE TO HAVE CF AND YOU HAVE NO IDEA WHAT IT MEANS TO RAISE A CHILD WITH CF! IF YOU KNEW YOU HAD AIDS WOULD YOU RUN AROUND SLEEPING WITH PEOPLE WITHOUT A CONDOM??? THAT IS SOME REAL SELFISH CRUEL ACTIONS. I KNOW PLENTY OF PEOPLE ON THIS BOARD CARRY THE GENE AND HAVE KIDS AND HAVE CF AND HAVE KIDS, BUT I DO NOT NOT UNDERSTAND WHY!!!!! IT IS SO MESSED UP!! MY FEV'S ARE 108% AND NO WAY ON THIS EARTH WOULD I REPRODUCE MYSELF!!! YET I'M CONSTANTLY READING HOW WOMEN WITH CF HAVE 60, 50, 40% AND THEY ARE REPRODUCING!!!! STOP THE MADNESS! STOP SPREADING THE DISEASE!!! LIFE IS HARD ENOUGH. DON'T MAKE A CHILD SUFFER BECAUSE YOU ARE SELFISH!!! AWWWWWW
I agree with the above post,- keep your mouth shut and stop spewing un-educated non scientific nonsense, - CF is NOT A DISEASE,-- ITS A CONDITION--, A DISEASE IS SOMETHING THAT SPREADS from human contact , and I find your post totally insulting.....
I agree with the above post,- keep your mouth shut and stop spewing un-educated non scientific nonsense, - CF is NOT A DISEASE,-- ITS A CONDITION--, A DISEASE IS SOMETHING THAT SPREADS from human contact , and I find your post totally insulting.....
CysticlyFIT
New member
Originally posted by: TheAmazingBD I was adopted at 3 weeks old and I am gracious for my birthmother giving me life but she had no idea she and my birthfather were carriers. I don't think it is right to spread a disease we Cfers spend our lives fighting. This chat board is proof that CF is not fun and not something anyone should be playing "god" with. I'm completely dumbfounded by women who are so desperate to have a child when they can't even breathe for themselves. Adopt. There are plenty of foster children who need loving families. Blood does not make a family. But DNA can be a death sentence.
Again, I STATE, --CF IS NOT A DISEASE, IT DON'T SPREAD TO CONTACT, -ITS A CONDITION,
"I'm completely dumbfounded by women who are so desperate to have a child when they can't even breathe for themselves. '--- What an <span class="st">ignorant statemt, you sound like liberalDemocrat on LSD's.....
Again, I STATE, --CF IS NOT A DISEASE, IT DON'T SPREAD TO CONTACT, -ITS A CONDITION,
"I'm completely dumbfounded by women who are so desperate to have a child when they can't even breathe for themselves. '--- What an <span class="st">ignorant statemt, you sound like liberalDemocrat on LSD's.....
CysticlyFIT
New member
Originally posted by: albino15 Right On littlemisssilly. umm, CF is a disease, that was a strange comment.
-I don't think its strange comment, as I don't consider MY CF a diease-PER SAY, disease has a very badconnotation & ring to to it, esp when people don't understand, - black plague was a disease, flu is a disease, chicken pox is disease, -it spreads from contact to contact, in the air, touching something, - A condition on the other hand is a fault in the body system somewhere,...that's my view on it, and that's what my DR calls it, a 'condition ' instead of a 'disease' ....
-I don't think its strange comment, as I don't consider MY CF a diease-PER SAY, disease has a very badconnotation & ring to to it, esp when people don't understand, - black plague was a disease, flu is a disease, chicken pox is disease, -it spreads from contact to contact, in the air, touching something, - A condition on the other hand is a fault in the body system somewhere,...that's my view on it, and that's what my DR calls it, a 'condition ' instead of a 'disease' ....
TheAmazingBD - Thank you for knowing your limits both physically and emotionally in terms of not having a child. Thank you to the others who've made informed decisions about what raising a child with CF entails. These children/adults will impact others in ways we won't always know. A child is a child - regardless of health status. I knew a boy who lived to be 16 years old...hundreds - no thousands, attended his funeral as he made such an impact on so many lives. He had a history of heart transplant and cancer yet was the most amazing and gracious person I've met. He deserved a life. A life worthy of living is not qualified by length of time spent of earth. TheAmazingBD - I hope you find a positive way to impact others as the young man I once knew...right now, you don't seem to be doing so.
TheAmazingBD
New member
I apologize to anyone I may have offended. My comment was not meant to do so. I truly apologize if anyone felt I categorized or called names. I am entitled to my opinion and in future I will be more mindful of my approach.
littlemisssilly: I did not come here to hurt anyones feelings but it is my right to have my own feelings and express them. As an adult with CF, I am speaking from my heart with my life experiences in mind. I grew up going to CF camp in California and returning each year to friends loosing life to CF and seeing parents, families and friends lives destroyed by the loss. Confusion and guilt and hurt were major topics we discussed at camp...at the age of 8, 9 or 10 years of age. They stopped camp because of CROSS CONTAMINATION of deadly bacteria. This is a current issue in the CF community. It's very challenging to grow up without anyone to connect to who has the same daily challenges. CF can be isolation in itself. It is not just the simplicity of birthing a child who may or may not have CF or be a carrier.
I did not post a second comment because the first had no response. It was about 1 minute difference in time that I posted. It seems that you feel I post to get a reaction and that is not the case. I read to learn and I post to express my feelings. I don't blame my parents for my having CF. My comment states "I am gracious for my birthmother giving me life but she had no idea she and my birthfather were carriers." I do not BLAME anyone. If it weren't for being adopted, I may not even be here. But I wouldn't know the difference is I wasn't. I am not a regretful person, and I am greatful for my life. I do not like having CF and I would not wish it upon anyone and I would not share my genetics knowingly. Again, that is my opinion.
I am fully aware of how a child becomes a carrier or is born with CF. I recognize that the decision to have children under such circumstances is a choice and not an easy one. I simply do not understand how someone with CF would risk their own health to birth a child who also may become a carrier or born with CF or how those who are known carriers would take the risk. The world is impacted in both situations, not just immediate family and friends and community. There isn't a cure, there are only medications and treatments.
I have been reading the forums all year and I hardly comment. I am mostly here to absorb. This is a very serious and touchy subject and again, I did apologize for my approach. I admire all mothers and fathers. Nonetheless, my feelings remain the same.
When I was young, DISEASE is the word that was used to describe CF and therefore I carry that with me. Disorder, condition, disease or whatever term, literal definition or not, CF is an UNPLEASANT body complication.
As far as comments on me making the statement that "I'm completely dumbfounded by women who are so desperate to have a child when they can't even breathe for themselves." It is from EXPERIENCE not ignorance I make that statement. When I wake up in the morning gasping for air, or hovered over the toilet trying to expectorate phlegm, I'm not thinking that this would be a positive situation to experience while carrying a child. I did not at any point say YOU ARE DUMB, I said I don't understand how YOU struggle to breath yet are willing to compromise your own health to bring another child into the world. It is CONCERN for the situation. I did say it is selfish. And I do believe that it is. Again, the risk taken to birth a child when you have CF or when the parents are both carriers is great. If it is a CHILD you desire, then I believe adoption is a wonderful option. Why risk it? That is my question.
Lastly, I have positively impacted 1000's of people lives. Since learning that I had CF, I've spent my life spreading awareness about CF, being a patient at Stanford for EVERY drug study, including ones MOST CF patients use today! I've raised thousands of dollars for research, helped create an exercise video for those with CF, ran the Olympic torch and 3 marathons in support of CFF. I continue to support other CFers in their personal struggles while I am working to find a better way to live with CF for myself. If this sole comment discredits my lifelong dedication in your eyes, so be it.
I am not coming to these forums to upset anyone and my life with CF is just as unique as any of yours. I have been blessed with life but I hurt, I struggle, and I have to make difficult decisions about my life that impacts world
littlemisssilly: I did not come here to hurt anyones feelings but it is my right to have my own feelings and express them. As an adult with CF, I am speaking from my heart with my life experiences in mind. I grew up going to CF camp in California and returning each year to friends loosing life to CF and seeing parents, families and friends lives destroyed by the loss. Confusion and guilt and hurt were major topics we discussed at camp...at the age of 8, 9 or 10 years of age. They stopped camp because of CROSS CONTAMINATION of deadly bacteria. This is a current issue in the CF community. It's very challenging to grow up without anyone to connect to who has the same daily challenges. CF can be isolation in itself. It is not just the simplicity of birthing a child who may or may not have CF or be a carrier.
I did not post a second comment because the first had no response. It was about 1 minute difference in time that I posted. It seems that you feel I post to get a reaction and that is not the case. I read to learn and I post to express my feelings. I don't blame my parents for my having CF. My comment states "I am gracious for my birthmother giving me life but she had no idea she and my birthfather were carriers." I do not BLAME anyone. If it weren't for being adopted, I may not even be here. But I wouldn't know the difference is I wasn't. I am not a regretful person, and I am greatful for my life. I do not like having CF and I would not wish it upon anyone and I would not share my genetics knowingly. Again, that is my opinion.
I am fully aware of how a child becomes a carrier or is born with CF. I recognize that the decision to have children under such circumstances is a choice and not an easy one. I simply do not understand how someone with CF would risk their own health to birth a child who also may become a carrier or born with CF or how those who are known carriers would take the risk. The world is impacted in both situations, not just immediate family and friends and community. There isn't a cure, there are only medications and treatments.
I have been reading the forums all year and I hardly comment. I am mostly here to absorb. This is a very serious and touchy subject and again, I did apologize for my approach. I admire all mothers and fathers. Nonetheless, my feelings remain the same.
When I was young, DISEASE is the word that was used to describe CF and therefore I carry that with me. Disorder, condition, disease or whatever term, literal definition or not, CF is an UNPLEASANT body complication.
As far as comments on me making the statement that "I'm completely dumbfounded by women who are so desperate to have a child when they can't even breathe for themselves." It is from EXPERIENCE not ignorance I make that statement. When I wake up in the morning gasping for air, or hovered over the toilet trying to expectorate phlegm, I'm not thinking that this would be a positive situation to experience while carrying a child. I did not at any point say YOU ARE DUMB, I said I don't understand how YOU struggle to breath yet are willing to compromise your own health to bring another child into the world. It is CONCERN for the situation. I did say it is selfish. And I do believe that it is. Again, the risk taken to birth a child when you have CF or when the parents are both carriers is great. If it is a CHILD you desire, then I believe adoption is a wonderful option. Why risk it? That is my question.
Lastly, I have positively impacted 1000's of people lives. Since learning that I had CF, I've spent my life spreading awareness about CF, being a patient at Stanford for EVERY drug study, including ones MOST CF patients use today! I've raised thousands of dollars for research, helped create an exercise video for those with CF, ran the Olympic torch and 3 marathons in support of CFF. I continue to support other CFers in their personal struggles while I am working to find a better way to live with CF for myself. If this sole comment discredits my lifelong dedication in your eyes, so be it.
I am not coming to these forums to upset anyone and my life with CF is just as unique as any of yours. I have been blessed with life but I hurt, I struggle, and I have to make difficult decisions about my life that impacts world