I agree...I wouldn't get an abortion if my child had CF. However, we didn't do IVF for the same reason...I couldn't "select" a "healthy" embryo for implantation. They're interchangeable, in my opinion. <img src="i/expressions/face-icon-small-sad.gif" border="0"> For us, it was either conceive naturally with the possibility of CF or not conceive at all....
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Considering a second child...What did you do?
- Thread starter humphrey711
- Start date
S
sdelorenzo
Guest
It is really hard to have the first child diagnosed with CF. I had wanted a large family and then our first child had CF. We didn't think twice about having a second child. For one, I didn't think our second would have it, we could handle it if they did, and we were comfortable with leaving it in God's hands. I was pretty shocked when an ultrasound two years later showed meconium illeus for our second pregnancy. That being said our son is a huge blessing. Baby #3 was a very difficult decision. We were not comfortable using donor sperm or IVF selection. I looked into adoption for a few years. Finally, after 5 years we decided to have another. Thankfully, baby #3 was a carrier and we were finished having children. When he turned one we found out we were unexpectedly pregnant with baby #4. I didn't test during either of these pregnancies, so it was difficult. What a huge blessing to find out after her birth that she is not even a carrier. The bottom line is...only you can decide if you are ready to have another child with CF. There are no guarantees either way-but all blessings!!
Sharon, mom of Sophia, 9 and Jack, 7 both with CF, Grant, 2 and Paige, 7 months both without CF
Sharon, mom of Sophia, 9 and Jack, 7 both with CF, Grant, 2 and Paige, 7 months both without CF
S
sdelorenzo
Guest
It is really hard to have the first child diagnosed with CF. I had wanted a large family and then our first child had CF. We didn't think twice about having a second child. For one, I didn't think our second would have it, we could handle it if they did, and we were comfortable with leaving it in God's hands. I was pretty shocked when an ultrasound two years later showed meconium illeus for our second pregnancy. That being said our son is a huge blessing. Baby #3 was a very difficult decision. We were not comfortable using donor sperm or IVF selection. I looked into adoption for a few years. Finally, after 5 years we decided to have another. Thankfully, baby #3 was a carrier and we were finished having children. When he turned one we found out we were unexpectedly pregnant with baby #4. I didn't test during either of these pregnancies, so it was difficult. What a huge blessing to find out after her birth that she is not even a carrier. The bottom line is...only you can decide if you are ready to have another child with CF. There are no guarantees either way-but all blessings!!
Sharon, mom of Sophia, 9 and Jack, 7 both with CF, Grant, 2 and Paige, 7 months both without CF
Sharon, mom of Sophia, 9 and Jack, 7 both with CF, Grant, 2 and Paige, 7 months both without CF
S
sdelorenzo
Guest
It is really hard to have the first child diagnosed with CF. I had wanted a large family and then our first child had CF. We didn't think twice about having a second child. For one, I didn't think our second would have it, we could handle it if they did, and we were comfortable with leaving it in God's hands. I was pretty shocked when an ultrasound two years later showed meconium illeus for our second pregnancy. That being said our son is a huge blessing. Baby #3 was a very difficult decision. We were not comfortable using donor sperm or IVF selection. I looked into adoption for a few years. Finally, after 5 years we decided to have another. Thankfully, baby #3 was a carrier and we were finished having children. When he turned one we found out we were unexpectedly pregnant with baby #4. I didn't test during either of these pregnancies, so it was difficult. What a huge blessing to find out after her birth that she is not even a carrier. The bottom line is...only you can decide if you are ready to have another child with CF. There are no guarantees either way-but all blessings!!
<br />Sharon, mom of Sophia, 9 and Jack, 7 both with CF, Grant, 2 and Paige, 7 months both without CF
<br />Sharon, mom of Sophia, 9 and Jack, 7 both with CF, Grant, 2 and Paige, 7 months both without CF
M
Mommafirst
Guest
Unfortunately, I know far too many people who made the decision to just "got for it" based on a pretty healthy first CF child. Then over time either the first child got much worse or the second child was born more severely impacted by CF. Judging your child's CF needs when she is four and doing well is just not indicative of what you have in the future.
I recognize this is a personal decision and only one that you can make, and you have to live with it. . . but I would NEVER take the chance of bringing another child with CF into this world. I could never live with myself knowing that I CHOSE to pass this disease to another person. Even on the good days, this disease SUCKS. It takes young kids. This week alone the CF community lost a 12 year old, a 17 year old and a 29 year old. <img src="i/expressions/face-icon-small-sad.gif" border="0"> And before the death, there is the daily treatments, the medicines, the doctors visits. . . and also keep in mine the medical costs. Having one with CF is a huge strain on our finances and we have good jobs and good insurance. With the state of our government, medicaid and other programs are not looking promising for the future . . . many adults with CF are unable to get insurance or struggle tremendously with medical bills.
So all in all, in my opinon there is just a lot to think about beyond just wanting a baby. These are choices that impact lots of lives, lots of bank accounts, lots of human feelings and suffering.
I know this is a hard decision, I hope you are able to find some clarity in an answer you can live with.
I recognize this is a personal decision and only one that you can make, and you have to live with it. . . but I would NEVER take the chance of bringing another child with CF into this world. I could never live with myself knowing that I CHOSE to pass this disease to another person. Even on the good days, this disease SUCKS. It takes young kids. This week alone the CF community lost a 12 year old, a 17 year old and a 29 year old. <img src="i/expressions/face-icon-small-sad.gif" border="0"> And before the death, there is the daily treatments, the medicines, the doctors visits. . . and also keep in mine the medical costs. Having one with CF is a huge strain on our finances and we have good jobs and good insurance. With the state of our government, medicaid and other programs are not looking promising for the future . . . many adults with CF are unable to get insurance or struggle tremendously with medical bills.
So all in all, in my opinon there is just a lot to think about beyond just wanting a baby. These are choices that impact lots of lives, lots of bank accounts, lots of human feelings and suffering.
I know this is a hard decision, I hope you are able to find some clarity in an answer you can live with.
M
Mommafirst
Guest
Unfortunately, I know far too many people who made the decision to just "got for it" based on a pretty healthy first CF child. Then over time either the first child got much worse or the second child was born more severely impacted by CF. Judging your child's CF needs when she is four and doing well is just not indicative of what you have in the future.
I recognize this is a personal decision and only one that you can make, and you have to live with it. . . but I would NEVER take the chance of bringing another child with CF into this world. I could never live with myself knowing that I CHOSE to pass this disease to another person. Even on the good days, this disease SUCKS. It takes young kids. This week alone the CF community lost a 12 year old, a 17 year old and a 29 year old. <img src="i/expressions/face-icon-small-sad.gif" border="0"> And before the death, there is the daily treatments, the medicines, the doctors visits. . . and also keep in mine the medical costs. Having one with CF is a huge strain on our finances and we have good jobs and good insurance. With the state of our government, medicaid and other programs are not looking promising for the future . . . many adults with CF are unable to get insurance or struggle tremendously with medical bills.
So all in all, in my opinon there is just a lot to think about beyond just wanting a baby. These are choices that impact lots of lives, lots of bank accounts, lots of human feelings and suffering.
I know this is a hard decision, I hope you are able to find some clarity in an answer you can live with.
I recognize this is a personal decision and only one that you can make, and you have to live with it. . . but I would NEVER take the chance of bringing another child with CF into this world. I could never live with myself knowing that I CHOSE to pass this disease to another person. Even on the good days, this disease SUCKS. It takes young kids. This week alone the CF community lost a 12 year old, a 17 year old and a 29 year old. <img src="i/expressions/face-icon-small-sad.gif" border="0"> And before the death, there is the daily treatments, the medicines, the doctors visits. . . and also keep in mine the medical costs. Having one with CF is a huge strain on our finances and we have good jobs and good insurance. With the state of our government, medicaid and other programs are not looking promising for the future . . . many adults with CF are unable to get insurance or struggle tremendously with medical bills.
So all in all, in my opinon there is just a lot to think about beyond just wanting a baby. These are choices that impact lots of lives, lots of bank accounts, lots of human feelings and suffering.
I know this is a hard decision, I hope you are able to find some clarity in an answer you can live with.
M
Mommafirst
Guest
Unfortunately, I know far too many people who made the decision to just "got for it" based on a pretty healthy first CF child. Then over time either the first child got much worse or the second child was born more severely impacted by CF. Judging your child's CF needs when she is four and doing well is just not indicative of what you have in the future.
<br />
<br />I recognize this is a personal decision and only one that you can make, and you have to live with it. . . but I would NEVER take the chance of bringing another child with CF into this world. I could never live with myself knowing that I CHOSE to pass this disease to another person. Even on the good days, this disease SUCKS. It takes young kids. This week alone the CF community lost a 12 year old, a 17 year old and a 29 year old. <img src="i/expressions/face-icon-small-sad.gif" border="0"> And before the death, there is the daily treatments, the medicines, the doctors visits. . . and also keep in mine the medical costs. Having one with CF is a huge strain on our finances and we have good jobs and good insurance. With the state of our government, medicaid and other programs are not looking promising for the future . . . many adults with CF are unable to get insurance or struggle tremendously with medical bills.
<br />
<br />So all in all, in my opinon there is just a lot to think about beyond just wanting a baby. These are choices that impact lots of lives, lots of bank accounts, lots of human feelings and suffering.
<br />
<br />I know this is a hard decision, I hope you are able to find some clarity in an answer you can live with.
<br />
<br />I recognize this is a personal decision and only one that you can make, and you have to live with it. . . but I would NEVER take the chance of bringing another child with CF into this world. I could never live with myself knowing that I CHOSE to pass this disease to another person. Even on the good days, this disease SUCKS. It takes young kids. This week alone the CF community lost a 12 year old, a 17 year old and a 29 year old. <img src="i/expressions/face-icon-small-sad.gif" border="0"> And before the death, there is the daily treatments, the medicines, the doctors visits. . . and also keep in mine the medical costs. Having one with CF is a huge strain on our finances and we have good jobs and good insurance. With the state of our government, medicaid and other programs are not looking promising for the future . . . many adults with CF are unable to get insurance or struggle tremendously with medical bills.
<br />
<br />So all in all, in my opinon there is just a lot to think about beyond just wanting a baby. These are choices that impact lots of lives, lots of bank accounts, lots of human feelings and suffering.
<br />
<br />I know this is a hard decision, I hope you are able to find some clarity in an answer you can live with.
Just my opinion. We talk about this a lot in our household as well. It is a very difficult decision, especially if you are one of those people that always thought you would have more than one child. I can tell you that the other CF moms that I am friends with that have multiple CF children wouldn't change a thing. From the outside looking in, I don't know if I could make that choice. I watch them struggle with managing each childs care and splitting time when one is in the hospital. It seems very difficult. Also, each family I know with two or more CF children (same gene combination and environment) their CF presents in totally different ways, so there is no way of predicting what your childs health will be.
There really isn't a right or wrong decision, only what you can live with and manage. What is right for your family? At this point, I am not sure what we will do...
There really isn't a right or wrong decision, only what you can live with and manage. What is right for your family? At this point, I am not sure what we will do...
Just my opinion. We talk about this a lot in our household as well. It is a very difficult decision, especially if you are one of those people that always thought you would have more than one child. I can tell you that the other CF moms that I am friends with that have multiple CF children wouldn't change a thing. From the outside looking in, I don't know if I could make that choice. I watch them struggle with managing each childs care and splitting time when one is in the hospital. It seems very difficult. Also, each family I know with two or more CF children (same gene combination and environment) their CF presents in totally different ways, so there is no way of predicting what your childs health will be.
There really isn't a right or wrong decision, only what you can live with and manage. What is right for your family? At this point, I am not sure what we will do...
There really isn't a right or wrong decision, only what you can live with and manage. What is right for your family? At this point, I am not sure what we will do...
Just my opinion. We talk about this a lot in our household as well. It is a very difficult decision, especially if you are one of those people that always thought you would have more than one child. I can tell you that the other CF moms that I am friends with that have multiple CF children wouldn't change a thing. From the outside looking in, I don't know if I could make that choice. I watch them struggle with managing each childs care and splitting time when one is in the hospital. It seems very difficult. Also, each family I know with two or more CF children (same gene combination and environment) their CF presents in totally different ways, so there is no way of predicting what your childs health will be.
<br />
<br />There really isn't a right or wrong decision, only what you can live with and manage. What is right for your family? At this point, I am not sure what we will do...
<br />
<br />There really isn't a right or wrong decision, only what you can live with and manage. What is right for your family? At this point, I am not sure what we will do...
Here are my 2 cents, not as a parent but as a big sis who has CF...
Remember that there is a 75% chance that your second child won't have CF. There is just as good a chance that your second kid won't even be a carrier as there is that they will have CF.
In my family, I have CF, my brother does not, and we were both conceived naturally. Of course it's had it's challenges. He had to put up with years of my parents putting tons of time into driving me to the doc and taking care of me when I'm sick. I still kick him off of the tv so I can do meds when we're both home. And on my end, it took years for me to feel relief instead of jealously when people asked if I had any siblings and if they were healthy and I would say "yes I do and he's not even a carrier." But in the end, I am so glad that my parents took the chance and gave me my little brother. He and I are really close and I can't imagine either childhood or adult life without having him around.
Remember that there is a 75% chance that your second child won't have CF. There is just as good a chance that your second kid won't even be a carrier as there is that they will have CF.
In my family, I have CF, my brother does not, and we were both conceived naturally. Of course it's had it's challenges. He had to put up with years of my parents putting tons of time into driving me to the doc and taking care of me when I'm sick. I still kick him off of the tv so I can do meds when we're both home. And on my end, it took years for me to feel relief instead of jealously when people asked if I had any siblings and if they were healthy and I would say "yes I do and he's not even a carrier." But in the end, I am so glad that my parents took the chance and gave me my little brother. He and I are really close and I can't imagine either childhood or adult life without having him around.
Here are my 2 cents, not as a parent but as a big sis who has CF...
Remember that there is a 75% chance that your second child won't have CF. There is just as good a chance that your second kid won't even be a carrier as there is that they will have CF.
In my family, I have CF, my brother does not, and we were both conceived naturally. Of course it's had it's challenges. He had to put up with years of my parents putting tons of time into driving me to the doc and taking care of me when I'm sick. I still kick him off of the tv so I can do meds when we're both home. And on my end, it took years for me to feel relief instead of jealously when people asked if I had any siblings and if they were healthy and I would say "yes I do and he's not even a carrier." But in the end, I am so glad that my parents took the chance and gave me my little brother. He and I are really close and I can't imagine either childhood or adult life without having him around.
Remember that there is a 75% chance that your second child won't have CF. There is just as good a chance that your second kid won't even be a carrier as there is that they will have CF.
In my family, I have CF, my brother does not, and we were both conceived naturally. Of course it's had it's challenges. He had to put up with years of my parents putting tons of time into driving me to the doc and taking care of me when I'm sick. I still kick him off of the tv so I can do meds when we're both home. And on my end, it took years for me to feel relief instead of jealously when people asked if I had any siblings and if they were healthy and I would say "yes I do and he's not even a carrier." But in the end, I am so glad that my parents took the chance and gave me my little brother. He and I are really close and I can't imagine either childhood or adult life without having him around.
Here are my 2 cents, not as a parent but as a big sis who has CF...
<br />
<br />Remember that there is a 75% chance that your second child won't have CF. There is just as good a chance that your second kid won't even be a carrier as there is that they will have CF.
<br />
<br />In my family, I have CF, my brother does not, and we were both conceived naturally. Of course it's had it's challenges. He had to put up with years of my parents putting tons of time into driving me to the doc and taking care of me when I'm sick. I still kick him off of the tv so I can do meds when we're both home. And on my end, it took years for me to feel relief instead of jealously when people asked if I had any siblings and if they were healthy and I would say "yes I do and he's not even a carrier." But in the end, I am so glad that my parents took the chance and gave me my little brother. He and I are really close and I can't imagine either childhood or adult life without having him around.
<br />
<br />Remember that there is a 75% chance that your second child won't have CF. There is just as good a chance that your second kid won't even be a carrier as there is that they will have CF.
<br />
<br />In my family, I have CF, my brother does not, and we were both conceived naturally. Of course it's had it's challenges. He had to put up with years of my parents putting tons of time into driving me to the doc and taking care of me when I'm sick. I still kick him off of the tv so I can do meds when we're both home. And on my end, it took years for me to feel relief instead of jealously when people asked if I had any siblings and if they were healthy and I would say "yes I do and he's not even a carrier." But in the end, I am so glad that my parents took the chance and gave me my little brother. He and I are really close and I can't imagine either childhood or adult life without having him around.
I recently received a newsletter from the CFF. It addresses the clinical trials of VX-770 & VX-809. These drugs, in combination, show great promise for anyone with the Delta F508 mutation.
I would strongly suggest that you go to <a href="http://www.cff.org">www.cff.org</a> and read the information on these two drugs.
Two years after I was dx the gene was discovered (1987) and this is the most positive information that I have received since then.
Good luck,
Bill
I would strongly suggest that you go to <a href="http://www.cff.org">www.cff.org</a> and read the information on these two drugs.
Two years after I was dx the gene was discovered (1987) and this is the most positive information that I have received since then.
Good luck,
Bill
I recently received a newsletter from the CFF. It addresses the clinical trials of VX-770 & VX-809. These drugs, in combination, show great promise for anyone with the Delta F508 mutation.
I would strongly suggest that you go to <a href="http://www.cff.org">www.cff.org</a> and read the information on these two drugs.
Two years after I was dx the gene was discovered (1987) and this is the most positive information that I have received since then.
Good luck,
Bill
I would strongly suggest that you go to <a href="http://www.cff.org">www.cff.org</a> and read the information on these two drugs.
Two years after I was dx the gene was discovered (1987) and this is the most positive information that I have received since then.
Good luck,
Bill
<p>I recently received a newsletter from the CFF. It addresses the clinical trials of VX-770 & VX-809. These drugs, in combination, show great promise for anyone with the Delta F508 mutation.
<p>I would strongly suggest that you go to <a href="http://www.cff.org">www.cff.org</a> and read the information on these two drugs.
<p>Two years after I was dx the gene was discovered (1987) and this is the most positive information that I have received since then.
<p>Good luck,
<p>Bill
<p>I would strongly suggest that you go to <a href="http://www.cff.org">www.cff.org</a> and read the information on these two drugs.
<p>Two years after I was dx the gene was discovered (1987) and this is the most positive information that I have received since then.
<p>Good luck,
<p>Bill
M
mneville
Guest
Our firstborn was shockingly to us diagnosed with CF, Double Delta at birth. I was devastated and knew pretty quickly that we would not chance it with another natural pregnancy. I agree with Heather that CF is a huge burden in so many ways and the future of medical care/insurance scares me for all those with CF. I do not want to give my child that burden if there is a way around it. Plus the cross contamination scares me; I think it would be best for Aidan if he were the only one with CF. We did IVF/PGD and had a second son who is only a CF carrier. We are currently trying the IVF/PGD route again.
On a good CF day, I am so tempted to 'take the chance' but then Aidan gets sick, the bills come piling in, Aidan screams that God hates him and that is why he gave him CF and I know we made the best choice for us. CF is a brutal disease even in 2010 and we do 100% treatments and our kid is sick all the time. I would not knowingly take the chance of doing it to another.
Would I trade Aidan? NO. Once they are here, it is a completely different story but that is not your question. Prevention once you know you are carriers could ultimately eliminate CF altogether. Isn't that what we are striving to do? Some people have strict religious beliefs and I respect that and struggle with it to some extent. But the God I believe in would never fault me for trying to have a healthy child.
Megan
On a good CF day, I am so tempted to 'take the chance' but then Aidan gets sick, the bills come piling in, Aidan screams that God hates him and that is why he gave him CF and I know we made the best choice for us. CF is a brutal disease even in 2010 and we do 100% treatments and our kid is sick all the time. I would not knowingly take the chance of doing it to another.
Would I trade Aidan? NO. Once they are here, it is a completely different story but that is not your question. Prevention once you know you are carriers could ultimately eliminate CF altogether. Isn't that what we are striving to do? Some people have strict religious beliefs and I respect that and struggle with it to some extent. But the God I believe in would never fault me for trying to have a healthy child.
Megan
M
mneville
Guest
Our firstborn was shockingly to us diagnosed with CF, Double Delta at birth. I was devastated and knew pretty quickly that we would not chance it with another natural pregnancy. I agree with Heather that CF is a huge burden in so many ways and the future of medical care/insurance scares me for all those with CF. I do not want to give my child that burden if there is a way around it. Plus the cross contamination scares me; I think it would be best for Aidan if he were the only one with CF. We did IVF/PGD and had a second son who is only a CF carrier. We are currently trying the IVF/PGD route again.
On a good CF day, I am so tempted to 'take the chance' but then Aidan gets sick, the bills come piling in, Aidan screams that God hates him and that is why he gave him CF and I know we made the best choice for us. CF is a brutal disease even in 2010 and we do 100% treatments and our kid is sick all the time. I would not knowingly take the chance of doing it to another.
Would I trade Aidan? NO. Once they are here, it is a completely different story but that is not your question. Prevention once you know you are carriers could ultimately eliminate CF altogether. Isn't that what we are striving to do? Some people have strict religious beliefs and I respect that and struggle with it to some extent. But the God I believe in would never fault me for trying to have a healthy child.
Megan
On a good CF day, I am so tempted to 'take the chance' but then Aidan gets sick, the bills come piling in, Aidan screams that God hates him and that is why he gave him CF and I know we made the best choice for us. CF is a brutal disease even in 2010 and we do 100% treatments and our kid is sick all the time. I would not knowingly take the chance of doing it to another.
Would I trade Aidan? NO. Once they are here, it is a completely different story but that is not your question. Prevention once you know you are carriers could ultimately eliminate CF altogether. Isn't that what we are striving to do? Some people have strict religious beliefs and I respect that and struggle with it to some extent. But the God I believe in would never fault me for trying to have a healthy child.
Megan
M
mneville
Guest
Our firstborn was shockingly to us diagnosed with CF, Double Delta at birth. I was devastated and knew pretty quickly that we would not chance it with another natural pregnancy. I agree with Heather that CF is a huge burden in so many ways and the future of medical care/insurance scares me for all those with CF. I do not want to give my child that burden if there is a way around it. Plus the cross contamination scares me; I think it would be best for Aidan if he were the only one with CF. We did IVF/PGD and had a second son who is only a CF carrier. We are currently trying the IVF/PGD route again.
<br />
<br />On a good CF day, I am so tempted to 'take the chance' but then Aidan gets sick, the bills come piling in, Aidan screams that God hates him and that is why he gave him CF and I know we made the best choice for us. CF is a brutal disease even in 2010 and we do 100% treatments and our kid is sick all the time. I would not knowingly take the chance of doing it to another.
<br />
<br />Would I trade Aidan? NO. Once they are here, it is a completely different story but that is not your question. Prevention once you know you are carriers could ultimately eliminate CF altogether. Isn't that what we are striving to do? Some people have strict religious beliefs and I respect that and struggle with it to some extent. But the God I believe in would never fault me for trying to have a healthy child.
<br />
<br />Megan
<br />
<br />On a good CF day, I am so tempted to 'take the chance' but then Aidan gets sick, the bills come piling in, Aidan screams that God hates him and that is why he gave him CF and I know we made the best choice for us. CF is a brutal disease even in 2010 and we do 100% treatments and our kid is sick all the time. I would not knowingly take the chance of doing it to another.
<br />
<br />Would I trade Aidan? NO. Once they are here, it is a completely different story but that is not your question. Prevention once you know you are carriers could ultimately eliminate CF altogether. Isn't that what we are striving to do? Some people have strict religious beliefs and I respect that and struggle with it to some extent. But the God I believe in would never fault me for trying to have a healthy child.
<br />
<br />Megan
"Healthy" is open to speculation. What is "healthy"? What life is "healthy" enough to be deemed worthy of living? Not a decision I am comfortable nor qualified to make. If I knew my son wouldn't have CF when he was in utero, but somehow knew he would die from leukemia at "some point" - is his life not worthy of living?? Certainly not. My daughter, as "unhealthy" as she is may influence many people in her life for GOOD because CF has made her who she is or will become. I don't believe in selecting people. I don't think that's my decision to make. Is there some mysterious yet definitive answer between "healthy" and "not healthy" enough to be born??