To take the 1 in 4 chance?
- Thread starter anonymous
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<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Like other people have said, you will need to decide for yourself wait you should do. But, you did ask for opinions so~
I beleive it would be selfish to try again knowing there is a 25% chance that the child will be born with CF. Yes every preganancy is a chance, but 25% is a huge risk. If you feel the need to have more children you really should consider adoption.
CF is a terrible disease, and until you have seen how bad it gets, seen someone cough up pure blood, struggle for every breath, live a life of constant struggle, and eventually die...I don't know if you can truely undestand the huge responsibilty you are going to burden another human being with.</end quote></div>
I understand what you are saying, we know CF is a terrible disease, but surely there are some positive things also, to weigh out the bad? Come on, don't be all negative.
</end quote></div>
Why not adopt, that can have just as many positives! Even if the adopted child is not 100% healthy, I'm saying health = positive.
But why knowingly have another baby that has a great risk of having a horrible disease. If that child does end up having CF you are not the only one that has to live with it...he/she has to live with it more than you.
Has your current child grown old enough to know and voice his/her concerns with you.
Why was a born like this....I hate doing treatments, being different...I wish I would just die...
Not being negative, just being realistic.</end quote></div>
Yeah, but I thing negative also. There is only a 75% chance of the baby having CF. Whether the baby was born without CF or not, there is also risks that the baby could have something wrong with it with loads things worse than CF. I think you're being negative cos there is a chance that the baby will not have CF also.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Like other people have said, you will need to decide for yourself wait you should do. But, you did ask for opinions so~
I beleive it would be selfish to try again knowing there is a 25% chance that the child will be born with CF. Yes every preganancy is a chance, but 25% is a huge risk. If you feel the need to have more children you really should consider adoption.
CF is a terrible disease, and until you have seen how bad it gets, seen someone cough up pure blood, struggle for every breath, live a life of constant struggle, and eventually die...I don't know if you can truely undestand the huge responsibilty you are going to burden another human being with.</end quote></div>
I understand what you are saying, we know CF is a terrible disease, but surely there are some positive things also, to weigh out the bad? Come on, don't be all negative.
Why not adopt, that can have just as many positives! Even if the adopted child is not 100% healthy, I'm saying health = positive.
But why knowingly have another baby that has a great risk of having a horrible disease. If that child does end up having CF you are not the only one that has to live with it...he/she has to live with it more than you.
Has your current child grown old enough to know and voice his/her concerns with you.
Why was a born like this....I hate doing treatments, being different...I wish I would just die...
Not being negative, just being realistic.</end quote></div>
Yeah, but I thing negative also. There is only a 75% chance of the baby having CF. Whether the baby was born without CF or not, there is also risks that the baby could have something wrong with it with loads things worse than CF. I think you're being negative cos there is a chance that the baby will not have CF also.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
beautiful babies can be adopted too</end quote></div>
Beautiful babies can be born with CF also. What's with the adoption all of a sudden.
<img src="i/expressions/face-icon-small-disgusted.gif" border="0">
beautiful babies can be adopted too</end quote></div>
Beautiful babies can be born with CF also. What's with the adoption all of a sudden.
<img src="i/expressions/face-icon-small-disgusted.gif" border="0">
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
I looked into adoption. We'd prefer a newborn or baby, but the costs involved are phenomenal -- with an adoption from an agency I belive it's $10,000-15,000. Guess it's money we'd rather put to use elsewhere.</end quote></div>
Do you know what the costs of CF are? I'd say they are far more phenomenal than adoption.
I looked into adoption. We'd prefer a newborn or baby, but the costs involved are phenomenal -- with an adoption from an agency I belive it's $10,000-15,000. Guess it's money we'd rather put to use elsewhere.</end quote></div>
Do you know what the costs of CF are? I'd say they are far more phenomenal than adoption.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
beautiful babies can be adopted too</end quote></div>
Yes, but as beautiful as they are, they are not genetically your own.</end quote></div>
Are you saying you can't love a baby that is not genetically your own? If that's the case you probably have not business becoming a parent through any means.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
beautiful babies can be adopted too</end quote></div>
Yes, but as beautiful as they are, they are not genetically your own.</end quote></div>
Are you saying you can't love a baby that is not genetically your own? If that's the case you probably have not business becoming a parent through any means.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
I looked into adoption. We'd prefer a newborn or baby, but the costs involved are phenomenal -- with an adoption from an agency I belive it's $10,000-15,000. Guess it's money we'd rather put to use elsewhere.</end quote></div>
Do you know what the costs of CF are? I'd say they are far more phenomenal than adoption.</end quote></div>
Yeah, I DO know all too well what the costs of CF are! Currently we're trying to set up savings accounts for our child's future healthcare costs. We're not willing to take the chance that another child would have CF. I'm not opposed to adoption, but feel it's cost prohibitive to try pregenetic diagnosis and/or adoption.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
I looked into adoption. We'd prefer a newborn or baby, but the costs involved are phenomenal -- with an adoption from an agency I belive it's $10,000-15,000. Guess it's money we'd rather put to use elsewhere.</end quote></div>
Do you know what the costs of CF are? I'd say they are far more phenomenal than adoption.</end quote></div>
Yeah, I DO know all too well what the costs of CF are! Currently we're trying to set up savings accounts for our child's future healthcare costs. We're not willing to take the chance that another child would have CF. I'm not opposed to adoption, but feel it's cost prohibitive to try pregenetic diagnosis and/or adoption.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Yeah, but I thing negative also. There is only a 75% chance of the baby having CF. Whether the baby was born without CF or not, there is also risks that the baby could have something wrong with it with loads things worse than CF. I think you're being negative cos there is a chance that the baby will not have CF also.</end quote></div>
Huh?
Goes to what Julie said...knowingly taking a chance on having a baby with CF. Of course we would all love out baby born with CF / without CF or with/without something else wrong. Why take the chance when there are other options out there?
Yeah, but I thing negative also. There is only a 75% chance of the baby having CF. Whether the baby was born without CF or not, there is also risks that the baby could have something wrong with it with loads things worse than CF. I think you're being negative cos there is a chance that the baby will not have CF also.</end quote></div>
Huh?
Goes to what Julie said...knowingly taking a chance on having a baby with CF. Of course we would all love out baby born with CF / without CF or with/without something else wrong. Why take the chance when there are other options out there?
PGD isn't an exact science -- it's really expensive, although a few people have gotten insurance to cover the costs, since it involves IVF, no guarantee you're going to conceive on the first try and I do believe that there are a few people who tried PGD and were the 1% that ended up conceiving a child wcf. Still, better odds than 25%. It's a personal choice. If you think you can handle it -- go for it. I have to many doubts to through caution into the wind and take my chances.
littledebbie
New member
Since you asked for opinions....I am 26 wCF and if my parents could have made the decision to have me - a child with CF- or not I would have told them no. Don't get me wrong I have had a happy life and everything, glad I'm here, which I know sounds like a contradiction, but really life is hard enough adding this disease to the mix...uggghhh why do that to a kid?<br><br>Also, someone else made a good point I think often gets glossed over we're CONTAGIOUS to each other. Would you add another child to your family knowing they could possibly compromise the health of your other child. Knowing that your attention to their health may now be split in half? I know it has been done, and sometimes with happy endings, but for a lot of happy endings we see represented here, I think we all know of others that didn't turn out well and are not on these boards to respond to your question.<br><br> Also, can we NOT turn this into a debate on pregnancy alternatives...that's not what was asked. I'm sure she knows how to look into her options. And that topic has been beaten unto death.<br><br>Anyhoo, that's just my take on it. Good Luck, I'm sure whatever you decide will be right for you and your family. <img src="i/expressions/heart.gif" border="0"> Tough desicions....
Debbie has a point -- recently read an article about siblings wcf -- one had a lung transplant, the other had cepacia. The sibs had to take separate cars, use separate dishes...
It's a difficult difficult personal decision, although I don't believe I would ever want my child wcf to think that he was the reason behind our deciding not to have any more children. There are a lot of other factors involved with our choice, one being age. My husband's cousin is an "older" parent of a child w/out cf and they thought long and hard about whether or not they should have another child. In the end, they decided to just have the one child. They still get grief from "well meaning" friends and relatives, as do we -- but having a child at the age of 45... 63 when the child graduates from high school, 67+ if the child goes off to college and graduates in 4 years...
Sometimes, I think... If it's meant to happen, an egg will slip out and we'll conceive a child. Though being on the pill since the age of 18, not gonna happen... My husband and I talked about more children again last night after holding his cousin's 5 month old. We just don't feel it's in the cards for us.
It's a difficult difficult personal decision, although I don't believe I would ever want my child wcf to think that he was the reason behind our deciding not to have any more children. There are a lot of other factors involved with our choice, one being age. My husband's cousin is an "older" parent of a child w/out cf and they thought long and hard about whether or not they should have another child. In the end, they decided to just have the one child. They still get grief from "well meaning" friends and relatives, as do we -- but having a child at the age of 45... 63 when the child graduates from high school, 67+ if the child goes off to college and graduates in 4 years...
Sometimes, I think... If it's meant to happen, an egg will slip out and we'll conceive a child. Though being on the pill since the age of 18, not gonna happen... My husband and I talked about more children again last night after holding his cousin's 5 month old. We just don't feel it's in the cards for us.
<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>beautiful babies can be adopted too</end quote></div>
Yes, but as beautiful as they are, they are not genetically your own.</end quote></div>
Are you saying you can't love a baby that is not genetically your own? If that's the case you probably have not business becoming a parent through any means. </end quote></div>
You love your spouse don't you? And they aren't genetically related. Trust me, from the instant they place that child in your arms, he or she is YOURS. No one else's. I have to agree with the third anon if youc an't understand that kind of love.
On the original topic, it's a chance I personally would not take, even loving Ry as much as I did, CF is a horrible thing to live with. BUt only you can make that choice.
Yes, but as beautiful as they are, they are not genetically your own.</end quote></div>
Are you saying you can't love a baby that is not genetically your own? If that's the case you probably have not business becoming a parent through any means. </end quote></div>
You love your spouse don't you? And they aren't genetically related. Trust me, from the instant they place that child in your arms, he or she is YOURS. No one else's. I have to agree with the third anon if youc an't understand that kind of love.
On the original topic, it's a chance I personally would not take, even loving Ry as much as I did, CF is a horrible thing to live with. BUt only you can make that choice.
As others have stated, this is a decision that you both will have to make on your own. I definately understand wanting the perspectives of others on this topic though. I started a post almost just like this one about a year ago and it was really eye-opening to me. My daughter was just about to turn 2 and DH and I were really feeling like we needed to make a "decision" on this matter. We had always dreamed of having 2 or 3 children until our daughter was dx with CF just after her first b-day. At that time, we totally put our thoughts of other children off. Last spring, I was going crazy over this bc I wanted to have a #2 so badly. So, I just started praying about this topic like crazy. I basically asked God to take it off my mind because I was being so distracted by the child(ren) I wasn't going to have that I was losing sight of the BEAUTIFUL daughter that I do have. It was an amazing relief to have this burden lifted off my shoulders and to really be able to focus on my daughter. I no longer felt the pangs for another child and it was wonderful! I realize prayer isn't an answer for everyone, but you might try it. I do have to tell you that only months after the burden of this "to have more or not" worry was taken away, I found out that I was pregnant. Realizing this was incredibly stressful bc of the 1 in 4 chance of CF and we were very relieved to find out that our baby-to-be would not have CF but I realize so much that it doesn't mean that he is "safe" from other problems in life.
Also, as an adoptee, I think adoption is great. I can understand why it isn't for everyone but it can be a great option.
Hugs to you and your family and you struggle with this decision,
Kelli - mom of Sydney 35 months wcf and Andrew 2.5 weeks nocf
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Also, as an adoptee, I think adoption is great. I can understand why it isn't for everyone but it can be a great option.
Hugs to you and your family and you struggle with this decision,
Kelli - mom of Sydney 35 months wcf and Andrew 2.5 weeks nocf
<a target=_blank class=ftalternatingbarlinklarge href="http://members.tripod.com/sydneymyers-ivil/">http://members.tripod.com/sydneymyers-ivil/</a>
I have a child that is 3 1/2 and we have struggled with the decision to have another child. We have had numerous hospital stays, and there always seems to be something going on, but in my opinion they are just hick-ups for us to deal with and then move on. I know a lot of the people giving their views are people with CF and they have first hand knowledge of this disease and the difficulties, I only understand the parents perspective. I do however understand that the difference for my child and the adults with CF is that the medications have improved and the over all quality of life is better for a longer time frame (this is a general statement).
My husband and I have decided to try for a second child and we will love and care for the child the same (CF or no CF). We have decided to wait for a while so that their is enough of an age difference between the children so I can devote my time now to this child and then have time to dedicate to the next one, particulary if it has CF. For me personally, CF is a difficult disease but people with CF are able to possitively contribute to society, family, friends, care providers, etc. We all have issues to cope with and as much as I wish CF was not apart of my families life, but it is, and so be it.
Best wishes to you and your family as you work through the issues.
My husband and I have decided to try for a second child and we will love and care for the child the same (CF or no CF). We have decided to wait for a while so that their is enough of an age difference between the children so I can devote my time now to this child and then have time to dedicate to the next one, particulary if it has CF. For me personally, CF is a difficult disease but people with CF are able to possitively contribute to society, family, friends, care providers, etc. We all have issues to cope with and as much as I wish CF was not apart of my families life, but it is, and so be it.
Best wishes to you and your family as you work through the issues.
Okay, lets play a little game of would you.......
Would you put a single bullet in a gun, spin the chamber, and place this by your child's head before pulling the trigger. It's only a 1/6 chance that the bullet would be there. To make it a better comparison, lets say by playing Russian Roulette, this is the only way you will ever get to raise your child. Would you take the chance so you would get the chance to raise him?
After all, playing CF Russian Roulette you have a higher risk......1/4!
Just something to think about.
Would you put a single bullet in a gun, spin the chamber, and place this by your child's head before pulling the trigger. It's only a 1/6 chance that the bullet would be there. To make it a better comparison, lets say by playing Russian Roulette, this is the only way you will ever get to raise your child. Would you take the chance so you would get the chance to raise him?
After all, playing CF Russian Roulette you have a higher risk......1/4!
Just something to think about.
DietRootBeer
New member
I feel your pain. We decided not to chance it naturally. We looked into IVF but it was 15,000$ and it felt a bit Frankensteinish too me. So we decided to stop at our 2nd son. Maybe if we only had one baby we would have considered other options. You need to listen to your inner voice. You're gut is probably pulling you one way or another. Listen. I have heard it said that our inner voice is God wispering. This is your decision and you must not let others influence it.
Let me tell you one thing. I found out older son had CF while pregnant with #2 and it was an agonizing 9 months. But I still turned down any testing due to small miscarry%. I really felt that CF or not that it was my little man and he had a place in this world. Cfers are special...they are my favorite patients.
Mummy to 2 boys. 10wcf and 4w/o
Let me tell you one thing. I found out older son had CF while pregnant with #2 and it was an agonizing 9 months. But I still turned down any testing due to small miscarry%. I really felt that CF or not that it was my little man and he had a place in this world. Cfers are special...they are my favorite patients.
Mummy to 2 boys. 10wcf and 4w/o
CFHockeyMom
New member
Like I said, a devisive topic...
I wonder how many of the parents that have posted here will feel differently when their children age, have more health issues. It seems a lot of the parents posting are still in the honeymoon phase of CF. Don't be fooled there are still plenty of CF parents out there burrying babies, 10 year olds, and teens.
Sorry for the negativity but it is reality and you need to know the reality before you can make an informed choice. The average age being 35 is merely an average and is somewhat skewed with the increase late diagnosis in mild cases. The average CFers (i.e. diagnosed in early childhood from several CF complications) work their a$$es off to make it to 35.
Just curious, if you're willing to foot the bill to potentially care for a 2nd CFer, why are you not willing to pay for PGD?
I wonder how many of the parents that have posted here will feel differently when their children age, have more health issues. It seems a lot of the parents posting are still in the honeymoon phase of CF. Don't be fooled there are still plenty of CF parents out there burrying babies, 10 year olds, and teens.
Sorry for the negativity but it is reality and you need to know the reality before you can make an informed choice. The average age being 35 is merely an average and is somewhat skewed with the increase late diagnosis in mild cases. The average CFers (i.e. diagnosed in early childhood from several CF complications) work their a$$es off to make it to 35.
Just curious, if you're willing to foot the bill to potentially care for a 2nd CFer, why are you not willing to pay for PGD?
irishdavid
New member
LIFE is all we have. Its all anyone has. How long it lasts depends on a lot of factors. CF makes it shorter than the average. It might makes it more painfull than the average but it's still LIFE.
No matter how bad CF is. There isn't one person who hasn't enjoyed at least part of their life as a cfer. I'm not trying to start anything but I don't understand how littledebbie can say that even though she has enjoyed her life that she wouldn't do it again.
If you aren't born then you aren't anything or anyone. You don't exist. If you got the choice to be born with cf or not at all and you choose not at all then that would be it. FULL STOP. No one would ever remember you (even for the bad stuff you did). You would never see how great and amazing it is to just BE.
In a way it is a miracle that any of us are here. The human race has only been around for an incomprehensibly small fraction of forever and we don't know how long more were going to last so if my particular selection of genes is one of the (relatively few) given a chance at experiencing some of this life stuff first hand then I'll take it.
Surely CF is not that bad that you would wish that you weren't born?
There doen't seem to be anyone other than parents (and cfer's with oposing opinions to mine). Where are all the cfers who are glad they came along for the ride?
No matter how bad CF is. There isn't one person who hasn't enjoyed at least part of their life as a cfer. I'm not trying to start anything but I don't understand how littledebbie can say that even though she has enjoyed her life that she wouldn't do it again.
If you aren't born then you aren't anything or anyone. You don't exist. If you got the choice to be born with cf or not at all and you choose not at all then that would be it. FULL STOP. No one would ever remember you (even for the bad stuff you did). You would never see how great and amazing it is to just BE.
In a way it is a miracle that any of us are here. The human race has only been around for an incomprehensibly small fraction of forever and we don't know how long more were going to last so if my particular selection of genes is one of the (relatively few) given a chance at experiencing some of this life stuff first hand then I'll take it.
Surely CF is not that bad that you would wish that you weren't born?
There doen't seem to be anyone other than parents (and cfer's with oposing opinions to mine). Where are all the cfers who are glad they came along for the ride?
I have 3 children, my oldest son is 13 no CF, my middle child is 10 w/CF and my youngest is 7 no CF and not a carrier. After having Kait we decided to have another child.. we did not want any testing because we were going to have our child no matter what. Don't get my wrong, i worried and i prayed and worried more but we were prepared to take care of her as well. After having our 3rd child we decided that we would not have anyore and i had a tubal. I really regret it now!!!
My son who is 13 has had 6 ear surgeries and now has implants as his inner ear bone. My daughter who is 7 had cataracts and now has implants. I agree that CF is scary but life is scary. None of us know if our children are going to be born with any other disease or at some point in their lives have a terminal disease. I am so glad that i have my daughter, just today at age 10 she told me that she would not be the person she is today if she didn't have CF, she is a very loving and compassionate child with so much love and she is enjoying life to its fullest.
Just because your child has CF doesn't mean that they will not be happy and it certainly doesn't mean that they will die before one without CF. My stepmother has buried 3 of her 4 sons. One died in a swimming accident ( hit his head on the bottom of the pool) One died from a heart attack and one died from congestive heart failure, they were all in their 30's. She has out lived 3 of her children and my only living stepbrother is diagnosed as bi-polar. He is almost 40 and has always lived at home... never had a job...never married and never any children.
Obviously this is a decision that only you and your husband can make. I regret the fact that i can not have any more children. In the 50's children with CF were not living long enough to attend school and now the life expectancy has risen to 36.8 years.. 5 years in just the last 4 years. I think that with more research and better meds our children will live longer lives.. even longer than some without CF.
Kaitsmom<img src="i/expressions/rose.gif" border="0">
My son who is 13 has had 6 ear surgeries and now has implants as his inner ear bone. My daughter who is 7 had cataracts and now has implants. I agree that CF is scary but life is scary. None of us know if our children are going to be born with any other disease or at some point in their lives have a terminal disease. I am so glad that i have my daughter, just today at age 10 she told me that she would not be the person she is today if she didn't have CF, she is a very loving and compassionate child with so much love and she is enjoying life to its fullest.
Just because your child has CF doesn't mean that they will not be happy and it certainly doesn't mean that they will die before one without CF. My stepmother has buried 3 of her 4 sons. One died in a swimming accident ( hit his head on the bottom of the pool) One died from a heart attack and one died from congestive heart failure, they were all in their 30's. She has out lived 3 of her children and my only living stepbrother is diagnosed as bi-polar. He is almost 40 and has always lived at home... never had a job...never married and never any children.
Obviously this is a decision that only you and your husband can make. I regret the fact that i can not have any more children. In the 50's children with CF were not living long enough to attend school and now the life expectancy has risen to 36.8 years.. 5 years in just the last 4 years. I think that with more research and better meds our children will live longer lives.. even longer than some without CF.
Kaitsmom<img src="i/expressions/rose.gif" border="0">
littledebbie
New member
Irishdavid I think you missed my point entirely and I think you did so on purpose or you just breezed through my post without really trying to get it. I never said I wish I wasn't born. I think this topic sort of borders on the age old question of when does "life" begin.<br><br> And you're right you aren't anyone or anything so you are not missed, you're not missing anything etc...you make my point. And I didn't say I wouldn't choose to be born at all...you are reading way into it I didn't get all into that because it gets into spiritual beliefs etc. and I dont think that has any place in this thread.