Newbie carrier

K

kr14v

New member
Sorry to ask so many questions, Heather...

So you wouldn't choose to have two because a second child with the disease would be overwhelming? Or now that you are more aware, you wouldn't choose to have the first with CF because it's so hard on your child/family/overall life quality? We are debating whether to take our chances, or to do the in vitro with the PDG (?) test at 8 cells.

THIS IS SO TOUGH!!
 
K

kr14v

New member
Sorry to ask so many questions, Heather...

So you wouldn't choose to have two because a second child with the disease would be overwhelming? Or now that you are more aware, you wouldn't choose to have the first with CF because it's so hard on your child/family/overall life quality? We are debating whether to take our chances, or to do the in vitro with the PDG (?) test at 8 cells.

THIS IS SO TOUGH!!
 
K

kr14v

New member
Sorry to ask so many questions, Heather...

So you wouldn't choose to have two because a second child with the disease would be overwhelming? Or now that you are more aware, you wouldn't choose to have the first with CF because it's so hard on your child/family/overall life quality? We are debating whether to take our chances, or to do the in vitro with the PDG (?) test at 8 cells.

THIS IS SO TOUGH!!
 
K

kr14v

New member
Sorry to ask so many questions, Heather...

So you wouldn't choose to have two because a second child with the disease would be overwhelming? Or now that you are more aware, you wouldn't choose to have the first with CF because it's so hard on your child/family/overall life quality? We are debating whether to take our chances, or to do the in vitro with the PDG (?) test at 8 cells.

THIS IS SO TOUGH!!
 
K

kr14v

New member
Sorry to ask so many questions, Heather...
<br />
<br />So you wouldn't choose to have two because a second child with the disease would be overwhelming? Or now that you are more aware, you wouldn't choose to have the first with CF because it's so hard on your child/family/overall life quality? We are debating whether to take our chances, or to do the in vitro with the PDG (?) test at 8 cells.
<br />
<br />THIS IS SO TOUGH!!
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kr14v</b></i>

Sorry to ask so many questions, Heather...



So you wouldn't choose to have two because a second child with the disease would be overwhelming? Or now that you are more aware, you wouldn't choose to have the first with CF because it's so hard on your child/family/overall life quality? We are debating whether to take our chances, or to do the in vitro with the PDG (?) test at 8 cells.



THIS IS SO TOUGH!!</end quote></div>

I would never trade my daughter for anything! CF and all, she is an amazing addition to our family. BUT knowing what I know now, I wouldn't have another child and risk adding another CF child to my world. I already have three kids, and I think its unfair to all of them to take that risk. Having a CF child is more work and more worry, but it is worth every bit of the effort. And I have great hope that this disease will NOT defeat us or my daughter!!
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kr14v</b></i>

Sorry to ask so many questions, Heather...



So you wouldn't choose to have two because a second child with the disease would be overwhelming? Or now that you are more aware, you wouldn't choose to have the first with CF because it's so hard on your child/family/overall life quality? We are debating whether to take our chances, or to do the in vitro with the PDG (?) test at 8 cells.



THIS IS SO TOUGH!!</end quote></div>

I would never trade my daughter for anything! CF and all, she is an amazing addition to our family. BUT knowing what I know now, I wouldn't have another child and risk adding another CF child to my world. I already have three kids, and I think its unfair to all of them to take that risk. Having a CF child is more work and more worry, but it is worth every bit of the effort. And I have great hope that this disease will NOT defeat us or my daughter!!
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kr14v</b></i>

Sorry to ask so many questions, Heather...



So you wouldn't choose to have two because a second child with the disease would be overwhelming? Or now that you are more aware, you wouldn't choose to have the first with CF because it's so hard on your child/family/overall life quality? We are debating whether to take our chances, or to do the in vitro with the PDG (?) test at 8 cells.



THIS IS SO TOUGH!!</end quote></div>

I would never trade my daughter for anything! CF and all, she is an amazing addition to our family. BUT knowing what I know now, I wouldn't have another child and risk adding another CF child to my world. I already have three kids, and I think its unfair to all of them to take that risk. Having a CF child is more work and more worry, but it is worth every bit of the effort. And I have great hope that this disease will NOT defeat us or my daughter!!
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kr14v</b></i>

Sorry to ask so many questions, Heather...



So you wouldn't choose to have two because a second child with the disease would be overwhelming? Or now that you are more aware, you wouldn't choose to have the first with CF because it's so hard on your child/family/overall life quality? We are debating whether to take our chances, or to do the in vitro with the PDG (?) test at 8 cells.



THIS IS SO TOUGH!!</end quote>

I would never trade my daughter for anything! CF and all, she is an amazing addition to our family. BUT knowing what I know now, I wouldn't have another child and risk adding another CF child to my world. I already have three kids, and I think its unfair to all of them to take that risk. Having a CF child is more work and more worry, but it is worth every bit of the effort. And I have great hope that this disease will NOT defeat us or my daughter!!
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kr14v</b></i>
<br />
<br />Sorry to ask so many questions, Heather...
<br />
<br />
<br />
<br />So you wouldn't choose to have two because a second child with the disease would be overwhelming? Or now that you are more aware, you wouldn't choose to have the first with CF because it's so hard on your child/family/overall life quality? We are debating whether to take our chances, or to do the in vitro with the PDG (?) test at 8 cells.
<br />
<br />
<br />
<br />THIS IS SO TOUGH!!</end quote>
<br />
<br />I would never trade my daughter for anything! CF and all, she is an amazing addition to our family. BUT knowing what I know now, I wouldn't have another child and risk adding another CF child to my world. I already have three kids, and I think its unfair to all of them to take that risk. Having a CF child is more work and more worry, but it is worth every bit of the effort. And I have great hope that this disease will NOT defeat us or my daughter!!
 
M

Mommafirst

Guest
I wanted to add that I totally understand that you are gathering up your information and trying to make an educated decision on how to proceed. I totally respect that. But ultimately, please don't rely on me or anyone else to clinch that decision for you. I'd love to tell you "hey just go for it, its only a 25% chance your child will have CF and kids like my daughter are worth the risk." I'd really love to say that, but just feel it is such an irresponsible thing for me to say. I have no clue how the guilt of knowing ahead of time would bear on your future. I have no way of knowing whether your child will have CF or not and if they do whether their CF will be immediately severe and life threatening or controllable and mild for decades.

I have been told by many doctors that someday in the very near future CF will be much like Diabetes. . . a disease that will be mostly manageable and one that shouldn't cut the patient's lifespan significantly. I hope that this day comes. It doesn't mean CF will be cured, but will someday not be as scary as it is today or as it was 30 years ago.

I bank a lot of my hope in this. You will have to decide where your hope comes from. Can it be in a PGD procedure that can effectively select out any CF children? While I think that this is a very hard decision personally, on the big scale picture, It would be great if genetic choices allowed to eventually erradicate the existence of CF entirely.
 
M

Mommafirst

Guest
I wanted to add that I totally understand that you are gathering up your information and trying to make an educated decision on how to proceed. I totally respect that. But ultimately, please don't rely on me or anyone else to clinch that decision for you. I'd love to tell you "hey just go for it, its only a 25% chance your child will have CF and kids like my daughter are worth the risk." I'd really love to say that, but just feel it is such an irresponsible thing for me to say. I have no clue how the guilt of knowing ahead of time would bear on your future. I have no way of knowing whether your child will have CF or not and if they do whether their CF will be immediately severe and life threatening or controllable and mild for decades.

I have been told by many doctors that someday in the very near future CF will be much like Diabetes. . . a disease that will be mostly manageable and one that shouldn't cut the patient's lifespan significantly. I hope that this day comes. It doesn't mean CF will be cured, but will someday not be as scary as it is today or as it was 30 years ago.

I bank a lot of my hope in this. You will have to decide where your hope comes from. Can it be in a PGD procedure that can effectively select out any CF children? While I think that this is a very hard decision personally, on the big scale picture, It would be great if genetic choices allowed to eventually erradicate the existence of CF entirely.
 
M

Mommafirst

Guest
I wanted to add that I totally understand that you are gathering up your information and trying to make an educated decision on how to proceed. I totally respect that. But ultimately, please don't rely on me or anyone else to clinch that decision for you. I'd love to tell you "hey just go for it, its only a 25% chance your child will have CF and kids like my daughter are worth the risk." I'd really love to say that, but just feel it is such an irresponsible thing for me to say. I have no clue how the guilt of knowing ahead of time would bear on your future. I have no way of knowing whether your child will have CF or not and if they do whether their CF will be immediately severe and life threatening or controllable and mild for decades.

I have been told by many doctors that someday in the very near future CF will be much like Diabetes. . . a disease that will be mostly manageable and one that shouldn't cut the patient's lifespan significantly. I hope that this day comes. It doesn't mean CF will be cured, but will someday not be as scary as it is today or as it was 30 years ago.

I bank a lot of my hope in this. You will have to decide where your hope comes from. Can it be in a PGD procedure that can effectively select out any CF children? While I think that this is a very hard decision personally, on the big scale picture, It would be great if genetic choices allowed to eventually erradicate the existence of CF entirely.
 
M

Mommafirst

Guest
I wanted to add that I totally understand that you are gathering up your information and trying to make an educated decision on how to proceed. I totally respect that. But ultimately, please don't rely on me or anyone else to clinch that decision for you. I'd love to tell you "hey just go for it, its only a 25% chance your child will have CF and kids like my daughter are worth the risk." I'd really love to say that, but just feel it is such an irresponsible thing for me to say. I have no clue how the guilt of knowing ahead of time would bear on your future. I have no way of knowing whether your child will have CF or not and if they do whether their CF will be immediately severe and life threatening or controllable and mild for decades.

I have been told by many doctors that someday in the very near future CF will be much like Diabetes. . . a disease that will be mostly manageable and one that shouldn't cut the patient's lifespan significantly. I hope that this day comes. It doesn't mean CF will be cured, but will someday not be as scary as it is today or as it was 30 years ago.

I bank a lot of my hope in this. You will have to decide where your hope comes from. Can it be in a PGD procedure that can effectively select out any CF children? While I think that this is a very hard decision personally, on the big scale picture, It would be great if genetic choices allowed to eventually erradicate the existence of CF entirely.
 
M

Mommafirst

Guest
I wanted to add that I totally understand that you are gathering up your information and trying to make an educated decision on how to proceed. I totally respect that. But ultimately, please don't rely on me or anyone else to clinch that decision for you. I'd love to tell you "hey just go for it, its only a 25% chance your child will have CF and kids like my daughter are worth the risk." I'd really love to say that, but just feel it is such an irresponsible thing for me to say. I have no clue how the guilt of knowing ahead of time would bear on your future. I have no way of knowing whether your child will have CF or not and if they do whether their CF will be immediately severe and life threatening or controllable and mild for decades.
<br />
<br />I have been told by many doctors that someday in the very near future CF will be much like Diabetes. . . a disease that will be mostly manageable and one that shouldn't cut the patient's lifespan significantly. I hope that this day comes. It doesn't mean CF will be cured, but will someday not be as scary as it is today or as it was 30 years ago.
<br />
<br />I bank a lot of my hope in this. You will have to decide where your hope comes from. Can it be in a PGD procedure that can effectively select out any CF children? While I think that this is a very hard decision personally, on the big scale picture, It would be great if genetic choices allowed to eventually erradicate the existence of CF entirely.
 
M

mneville

Guest
Our firstborn son Aidan was diagnosed with CF (Double Delta- the same genes you and your spouse carry) when he was 8 days old. I had been told I was NOT a carrier during my pregnancy. Well, it turns out there was a mistake and the test had never been run.

It was a shock to say the least when Aidan was diagnosed. After learning about CF and the effects it had on Aidan, we knew WE would never take the 1 in 4 chance of giving this to another child. My husband and I both work full time and caring for a child with CF is an enormous task. To us, prevention is key. We don't smoke or drink when we are pregnant to avoid the CHANCE of something happening to our baby. Why would we take the huge chance of giving our child a tough disease? We chose the prevention route and did go through IVF/PGD to have our second son, Gavin who does not have CF.

There is no right or wrong answer and I don't judge anyone's decision. We did what we felt was right for Aidan and for our family. If we had known we were carriers before getting pregnant with Aidan, we would have chosen the prevention route as well, IVF/PGD or adoption. Of course, we love Aidan and spend everyday keeping him healthy and fundraising for a cure. But if we had known, we would not have taken the 1 in 4 chance. It is SUCH a tough decision and IVF/PGD is not easy or cheap to go through. But either is raising a child with Cystic Fibrosis. Either way, every child is a blessing. In the end, it is only you two who have to be at peace with your decision. Best of luck. Contact me if you have any questions about IVF/PGD.

Megan, mom to Aidan 4 with CF and Gavin 16 months NO CF
 
M

mneville

Guest
Our firstborn son Aidan was diagnosed with CF (Double Delta- the same genes you and your spouse carry) when he was 8 days old. I had been told I was NOT a carrier during my pregnancy. Well, it turns out there was a mistake and the test had never been run.

It was a shock to say the least when Aidan was diagnosed. After learning about CF and the effects it had on Aidan, we knew WE would never take the 1 in 4 chance of giving this to another child. My husband and I both work full time and caring for a child with CF is an enormous task. To us, prevention is key. We don't smoke or drink when we are pregnant to avoid the CHANCE of something happening to our baby. Why would we take the huge chance of giving our child a tough disease? We chose the prevention route and did go through IVF/PGD to have our second son, Gavin who does not have CF.

There is no right or wrong answer and I don't judge anyone's decision. We did what we felt was right for Aidan and for our family. If we had known we were carriers before getting pregnant with Aidan, we would have chosen the prevention route as well, IVF/PGD or adoption. Of course, we love Aidan and spend everyday keeping him healthy and fundraising for a cure. But if we had known, we would not have taken the 1 in 4 chance. It is SUCH a tough decision and IVF/PGD is not easy or cheap to go through. But either is raising a child with Cystic Fibrosis. Either way, every child is a blessing. In the end, it is only you two who have to be at peace with your decision. Best of luck. Contact me if you have any questions about IVF/PGD.

Megan, mom to Aidan 4 with CF and Gavin 16 months NO CF
 
M

mneville

Guest
Our firstborn son Aidan was diagnosed with CF (Double Delta- the same genes you and your spouse carry) when he was 8 days old. I had been told I was NOT a carrier during my pregnancy. Well, it turns out there was a mistake and the test had never been run.

It was a shock to say the least when Aidan was diagnosed. After learning about CF and the effects it had on Aidan, we knew WE would never take the 1 in 4 chance of giving this to another child. My husband and I both work full time and caring for a child with CF is an enormous task. To us, prevention is key. We don't smoke or drink when we are pregnant to avoid the CHANCE of something happening to our baby. Why would we take the huge chance of giving our child a tough disease? We chose the prevention route and did go through IVF/PGD to have our second son, Gavin who does not have CF.

There is no right or wrong answer and I don't judge anyone's decision. We did what we felt was right for Aidan and for our family. If we had known we were carriers before getting pregnant with Aidan, we would have chosen the prevention route as well, IVF/PGD or adoption. Of course, we love Aidan and spend everyday keeping him healthy and fundraising for a cure. But if we had known, we would not have taken the 1 in 4 chance. It is SUCH a tough decision and IVF/PGD is not easy or cheap to go through. But either is raising a child with Cystic Fibrosis. Either way, every child is a blessing. In the end, it is only you two who have to be at peace with your decision. Best of luck. Contact me if you have any questions about IVF/PGD.

Megan, mom to Aidan 4 with CF and Gavin 16 months NO CF
 
M

mneville

Guest
Our firstborn son Aidan was diagnosed with CF (Double Delta- the same genes you and your spouse carry) when he was 8 days old. I had been told I was NOT a carrier during my pregnancy. Well, it turns out there was a mistake and the test had never been run.

It was a shock to say the least when Aidan was diagnosed. After learning about CF and the effects it had on Aidan, we knew WE would never take the 1 in 4 chance of giving this to another child. My husband and I both work full time and caring for a child with CF is an enormous task. To us, prevention is key. We don't smoke or drink when we are pregnant to avoid the CHANCE of something happening to our baby. Why would we take the huge chance of giving our child a tough disease? We chose the prevention route and did go through IVF/PGD to have our second son, Gavin who does not have CF.

There is no right or wrong answer and I don't judge anyone's decision. We did what we felt was right for Aidan and for our family. If we had known we were carriers before getting pregnant with Aidan, we would have chosen the prevention route as well, IVF/PGD or adoption. Of course, we love Aidan and spend everyday keeping him healthy and fundraising for a cure. But if we had known, we would not have taken the 1 in 4 chance. It is SUCH a tough decision and IVF/PGD is not easy or cheap to go through. But either is raising a child with Cystic Fibrosis. Either way, every child is a blessing. In the end, it is only you two who have to be at peace with your decision. Best of luck. Contact me if you have any questions about IVF/PGD.

Megan, mom to Aidan 4 with CF and Gavin 16 months NO CF
 
M

mneville

Guest
Our firstborn son Aidan was diagnosed with CF (Double Delta- the same genes you and your spouse carry) when he was 8 days old. I had been told I was NOT a carrier during my pregnancy. Well, it turns out there was a mistake and the test had never been run.
<br />
<br />It was a shock to say the least when Aidan was diagnosed. After learning about CF and the effects it had on Aidan, we knew WE would never take the 1 in 4 chance of giving this to another child. My husband and I both work full time and caring for a child with CF is an enormous task. To us, prevention is key. We don't smoke or drink when we are pregnant to avoid the CHANCE of something happening to our baby. Why would we take the huge chance of giving our child a tough disease? We chose the prevention route and did go through IVF/PGD to have our second son, Gavin who does not have CF.
<br />
<br />There is no right or wrong answer and I don't judge anyone's decision. We did what we felt was right for Aidan and for our family. If we had known we were carriers before getting pregnant with Aidan, we would have chosen the prevention route as well, IVF/PGD or adoption. Of course, we love Aidan and spend everyday keeping him healthy and fundraising for a cure. But if we had known, we would not have taken the 1 in 4 chance. It is SUCH a tough decision and IVF/PGD is not easy or cheap to go through. But either is raising a child with Cystic Fibrosis. Either way, every child is a blessing. In the end, it is only you two who have to be at peace with your decision. Best of luck. Contact me if you have any questions about IVF/PGD.
<br />
<br />Megan, mom to Aidan 4 with CF and Gavin 16 months NO CF
 
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