Have questions to all the moms?

2

2girls

New member
Hello - I not not entirely new to this site as we had a scare w/ CF a few years ago when my daughter was born. We found out when we were prego that my husband and I both carry the Delta F508 gene. God blessed us with a healthy daughter. We had her cord blood tested and she is not even a carrier. My 5 year old has had the sweat test, sot we don't know if she is a carrier, but thankfully she does not have CF either.

My question is - if you knew you were a carrier of the gene - knowing what you do about raising a child with CF - would it prevent you from having another child?

I want another child in the absolute worst way and I accept the fact that we may have a baby with CF, but my husband says absolutely not. I would just like some feedback on really what it is like to have a child w/ CF and if I am just being selfish in wanting another child.

We live an hour from St. Louis, MO, but we have access to wonderful children's hospitals and I work at St. John's Mercy and I know for a fact we have a great children's hospital - not a CF clinic, but a great pulmonogist.

Thanks so much for your insite - my biological clock is ticking!

Mommy to 2 beautiful, healthy girls
Grace - 5 (8/8/02)
Lilly - 2 (2/1/06)
 
2

2girls

New member
Hello - I not not entirely new to this site as we had a scare w/ CF a few years ago when my daughter was born. We found out when we were prego that my husband and I both carry the Delta F508 gene. God blessed us with a healthy daughter. We had her cord blood tested and she is not even a carrier. My 5 year old has had the sweat test, sot we don't know if she is a carrier, but thankfully she does not have CF either.

My question is - if you knew you were a carrier of the gene - knowing what you do about raising a child with CF - would it prevent you from having another child?

I want another child in the absolute worst way and I accept the fact that we may have a baby with CF, but my husband says absolutely not. I would just like some feedback on really what it is like to have a child w/ CF and if I am just being selfish in wanting another child.

We live an hour from St. Louis, MO, but we have access to wonderful children's hospitals and I work at St. John's Mercy and I know for a fact we have a great children's hospital - not a CF clinic, but a great pulmonogist.

Thanks so much for your insite - my biological clock is ticking!

Mommy to 2 beautiful, healthy girls
Grace - 5 (8/8/02)
Lilly - 2 (2/1/06)
 
2

2girls

New member
Hello - I not not entirely new to this site as we had a scare w/ CF a few years ago when my daughter was born. We found out when we were prego that my husband and I both carry the Delta F508 gene. God blessed us with a healthy daughter. We had her cord blood tested and she is not even a carrier. My 5 year old has had the sweat test, sot we don't know if she is a carrier, but thankfully she does not have CF either.

My question is - if you knew you were a carrier of the gene - knowing what you do about raising a child with CF - would it prevent you from having another child?

I want another child in the absolute worst way and I accept the fact that we may have a baby with CF, but my husband says absolutely not. I would just like some feedback on really what it is like to have a child w/ CF and if I am just being selfish in wanting another child.

We live an hour from St. Louis, MO, but we have access to wonderful children's hospitals and I work at St. John's Mercy and I know for a fact we have a great children's hospital - not a CF clinic, but a great pulmonogist.

Thanks so much for your insite - my biological clock is ticking!

Mommy to 2 beautiful, healthy girls
Grace - 5 (8/8/02)
Lilly - 2 (2/1/06)
 
2

2girls

New member
Hello - I not not entirely new to this site as we had a scare w/ CF a few years ago when my daughter was born. We found out when we were prego that my husband and I both carry the Delta F508 gene. God blessed us with a healthy daughter. We had her cord blood tested and she is not even a carrier. My 5 year old has had the sweat test, sot we don't know if she is a carrier, but thankfully she does not have CF either.

My question is - if you knew you were a carrier of the gene - knowing what you do about raising a child with CF - would it prevent you from having another child?

I want another child in the absolute worst way and I accept the fact that we may have a baby with CF, but my husband says absolutely not. I would just like some feedback on really what it is like to have a child w/ CF and if I am just being selfish in wanting another child.

We live an hour from St. Louis, MO, but we have access to wonderful children's hospitals and I work at St. John's Mercy and I know for a fact we have a great children's hospital - not a CF clinic, but a great pulmonogist.

Thanks so much for your insite - my biological clock is ticking!

Mommy to 2 beautiful, healthy girls
Grace - 5 (8/8/02)
Lilly - 2 (2/1/06)
 
2

2girls

New member
Hello - I not not entirely new to this site as we had a scare w/ CF a few years ago when my daughter was born. We found out when we were prego that my husband and I both carry the Delta F508 gene. God blessed us with a healthy daughter. We had her cord blood tested and she is not even a carrier. My 5 year old has had the sweat test, sot we don't know if she is a carrier, but thankfully she does not have CF either.
<br />
<br />My question is - if you knew you were a carrier of the gene - knowing what you do about raising a child with CF - would it prevent you from having another child?
<br />
<br />I want another child in the absolute worst way and I accept the fact that we may have a baby with CF, but my husband says absolutely not. I would just like some feedback on really what it is like to have a child w/ CF and if I am just being selfish in wanting another child.
<br />
<br />We live an hour from St. Louis, MO, but we have access to wonderful children's hospitals and I work at St. John's Mercy and I know for a fact we have a great children's hospital - not a CF clinic, but a great pulmonogist.
<br />
<br />Thanks so much for your insite - my biological clock is ticking!
<br />
<br />Mommy to 2 beautiful, healthy girls
<br />Grace - 5 (8/8/02)
<br />Lilly - 2 (2/1/06)
 
M

Mommafirst

Guest
While I would never ever go back and change having my daughter, I would also not choose to conceive another child knowing CF was a possibility. Do I think a life with CF is impossible? NO. Do I think my daughter's life is totally more than all we do to keep her healthy? YES. I love my daughter and wouldn't change her a bit, but this disease sucks and gets worse over time and I wouldn't knowingly bring a life into it.

But that is just me. You have to do what you feel is best. There are ways to conceive through IVF that can assure the embryo does not have CF. Or if you NEED to have more kids, you might consider adoption or foster parenting.

If my husband and I decide to add any more to our family, we will most certainly adopt. Again, I know its not for everyone, but I just won't risk putting another child through the CF life, if I can help it.
 
M

Mommafirst

Guest
While I would never ever go back and change having my daughter, I would also not choose to conceive another child knowing CF was a possibility. Do I think a life with CF is impossible? NO. Do I think my daughter's life is totally more than all we do to keep her healthy? YES. I love my daughter and wouldn't change her a bit, but this disease sucks and gets worse over time and I wouldn't knowingly bring a life into it.

But that is just me. You have to do what you feel is best. There are ways to conceive through IVF that can assure the embryo does not have CF. Or if you NEED to have more kids, you might consider adoption or foster parenting.

If my husband and I decide to add any more to our family, we will most certainly adopt. Again, I know its not for everyone, but I just won't risk putting another child through the CF life, if I can help it.
 
M

Mommafirst

Guest
While I would never ever go back and change having my daughter, I would also not choose to conceive another child knowing CF was a possibility. Do I think a life with CF is impossible? NO. Do I think my daughter's life is totally more than all we do to keep her healthy? YES. I love my daughter and wouldn't change her a bit, but this disease sucks and gets worse over time and I wouldn't knowingly bring a life into it.

But that is just me. You have to do what you feel is best. There are ways to conceive through IVF that can assure the embryo does not have CF. Or if you NEED to have more kids, you might consider adoption or foster parenting.

If my husband and I decide to add any more to our family, we will most certainly adopt. Again, I know its not for everyone, but I just won't risk putting another child through the CF life, if I can help it.
 
M

Mommafirst

Guest
While I would never ever go back and change having my daughter, I would also not choose to conceive another child knowing CF was a possibility. Do I think a life with CF is impossible? NO. Do I think my daughter's life is totally more than all we do to keep her healthy? YES. I love my daughter and wouldn't change her a bit, but this disease sucks and gets worse over time and I wouldn't knowingly bring a life into it.

But that is just me. You have to do what you feel is best. There are ways to conceive through IVF that can assure the embryo does not have CF. Or if you NEED to have more kids, you might consider adoption or foster parenting.

If my husband and I decide to add any more to our family, we will most certainly adopt. Again, I know its not for everyone, but I just won't risk putting another child through the CF life, if I can help it.
 
M

Mommafirst

Guest
While I would never ever go back and change having my daughter, I would also not choose to conceive another child knowing CF was a possibility. Do I think a life with CF is impossible? NO. Do I think my daughter's life is totally more than all we do to keep her healthy? YES. I love my daughter and wouldn't change her a bit, but this disease sucks and gets worse over time and I wouldn't knowingly bring a life into it.
<br />
<br />But that is just me. You have to do what you feel is best. There are ways to conceive through IVF that can assure the embryo does not have CF. Or if you NEED to have more kids, you might consider adoption or foster parenting.
<br />
<br />If my husband and I decide to add any more to our family, we will most certainly adopt. Again, I know its not for everyone, but I just won't risk putting another child through the CF life, if I can help it.
 
J

JazzysMom

New member
This topic has been discussed a few times. Often with a lot of heated exchanges so in addition to the comments you get on this thread, you might want to do a search for the others.

Good Luck!
 
J

JazzysMom

New member
This topic has been discussed a few times. Often with a lot of heated exchanges so in addition to the comments you get on this thread, you might want to do a search for the others.

Good Luck!
 
J

JazzysMom

New member
This topic has been discussed a few times. Often with a lot of heated exchanges so in addition to the comments you get on this thread, you might want to do a search for the others.

Good Luck!
 
J

JazzysMom

New member
This topic has been discussed a few times. Often with a lot of heated exchanges so in addition to the comments you get on this thread, you might want to do a search for the others.

Good Luck!
 
J

JazzysMom

New member
This topic has been discussed a few times. Often with a lot of heated exchanges so in addition to the comments you get on this thread, you might want to do a search for the others.
<br />
<br />Good Luck!
 
M

mneville

Guest
Hi Deidre. This is a loaded topic but one that is so central to our lives when we know we have the 1:4 chance of having children with CF. It has totally changed our marriage and lives as we imagined.

Our oldest son Aidan was born with CF 3 years ago. We had no idea we were carriers at the time. I was devastated and knew we would never take a chance even though we desperately wanted more. CF is manageable but its a tough road physically, financially and emotionally. My husband said he would feel horribly guilty if we took that chance and had another child with CF.

Having said that, we chose the IVF/PGD route and now have a healthy one year old Gavin. It has been the most wonderful addition to our family! Every family is different but in our situation (both full time working parents) two children with CF would have put us over the edge and we would have needed so much help to care for them. There is NEVER a break from CF- everyday in and out. Plus you have no idea how sick/healthy your child with CF may be. Aidan has had numerous surgeries/hospital stays and it is such a delicate balancing act. So for our family, PGD was a miracle!

Megan
 
M

mneville

Guest
Hi Deidre. This is a loaded topic but one that is so central to our lives when we know we have the 1:4 chance of having children with CF. It has totally changed our marriage and lives as we imagined.

Our oldest son Aidan was born with CF 3 years ago. We had no idea we were carriers at the time. I was devastated and knew we would never take a chance even though we desperately wanted more. CF is manageable but its a tough road physically, financially and emotionally. My husband said he would feel horribly guilty if we took that chance and had another child with CF.

Having said that, we chose the IVF/PGD route and now have a healthy one year old Gavin. It has been the most wonderful addition to our family! Every family is different but in our situation (both full time working parents) two children with CF would have put us over the edge and we would have needed so much help to care for them. There is NEVER a break from CF- everyday in and out. Plus you have no idea how sick/healthy your child with CF may be. Aidan has had numerous surgeries/hospital stays and it is such a delicate balancing act. So for our family, PGD was a miracle!

Megan
 
M

mneville

Guest
Hi Deidre. This is a loaded topic but one that is so central to our lives when we know we have the 1:4 chance of having children with CF. It has totally changed our marriage and lives as we imagined.

Our oldest son Aidan was born with CF 3 years ago. We had no idea we were carriers at the time. I was devastated and knew we would never take a chance even though we desperately wanted more. CF is manageable but its a tough road physically, financially and emotionally. My husband said he would feel horribly guilty if we took that chance and had another child with CF.

Having said that, we chose the IVF/PGD route and now have a healthy one year old Gavin. It has been the most wonderful addition to our family! Every family is different but in our situation (both full time working parents) two children with CF would have put us over the edge and we would have needed so much help to care for them. There is NEVER a break from CF- everyday in and out. Plus you have no idea how sick/healthy your child with CF may be. Aidan has had numerous surgeries/hospital stays and it is such a delicate balancing act. So for our family, PGD was a miracle!

Megan
 
M

mneville

Guest
Hi Deidre. This is a loaded topic but one that is so central to our lives when we know we have the 1:4 chance of having children with CF. It has totally changed our marriage and lives as we imagined.

Our oldest son Aidan was born with CF 3 years ago. We had no idea we were carriers at the time. I was devastated and knew we would never take a chance even though we desperately wanted more. CF is manageable but its a tough road physically, financially and emotionally. My husband said he would feel horribly guilty if we took that chance and had another child with CF.

Having said that, we chose the IVF/PGD route and now have a healthy one year old Gavin. It has been the most wonderful addition to our family! Every family is different but in our situation (both full time working parents) two children with CF would have put us over the edge and we would have needed so much help to care for them. There is NEVER a break from CF- everyday in and out. Plus you have no idea how sick/healthy your child with CF may be. Aidan has had numerous surgeries/hospital stays and it is such a delicate balancing act. So for our family, PGD was a miracle!

Megan
 
M

mneville

Guest
Hi Deidre. This is a loaded topic but one that is so central to our lives when we know we have the 1:4 chance of having children with CF. It has totally changed our marriage and lives as we imagined.
<br />
<br />Our oldest son Aidan was born with CF 3 years ago. We had no idea we were carriers at the time. I was devastated and knew we would never take a chance even though we desperately wanted more. CF is manageable but its a tough road physically, financially and emotionally. My husband said he would feel horribly guilty if we took that chance and had another child with CF.
<br />
<br />Having said that, we chose the IVF/PGD route and now have a healthy one year old Gavin. It has been the most wonderful addition to our family! Every family is different but in our situation (both full time working parents) two children with CF would have put us over the edge and we would have needed so much help to care for them. There is NEVER a break from CF- everyday in and out. Plus you have no idea how sick/healthy your child with CF may be. Aidan has had numerous surgeries/hospital stays and it is such a delicate balancing act. So for our family, PGD was a miracle!
<br />
<br />Megan
 
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