Siblings with CF

T

Transplantmommy

New member
I cannot speak from personal experience because I am a CFer and do not have any children with CF. I just wanted to #1: congratulate you on the pregnancy, #2: say that if the child having CF makes no difference in you keeping the baby or not, I would not get the amnio done, and #3: There is a rather larger Amish family that goes to the same CF clinic that I go to. They have I think like 9 (or more) children and MOST of them have CF. From what I have seen when I see them, there are more that are worse off than the others. There are some reaching into their teens and are fine and then there was one who (when the last time I saw them) was one of the youngest and not fairing so well. If he didn't get transplants, he wouldn't make it. I have not seen them in a while because I hardly go there since I had the transplants, so I don't keep track of them anymore.

Good luck with the new baby when it comes. Whether the baby has CF or not, I am sure that you will love the baby no matter what!! Congratulations!
 
T

Transplantmommy

New member
I cannot speak from personal experience because I am a CFer and do not have any children with CF. I just wanted to #1: congratulate you on the pregnancy, #2: say that if the child having CF makes no difference in you keeping the baby or not, I would not get the amnio done, and #3: There is a rather larger Amish family that goes to the same CF clinic that I go to. They have I think like 9 (or more) children and MOST of them have CF. From what I have seen when I see them, there are more that are worse off than the others. There are some reaching into their teens and are fine and then there was one who (when the last time I saw them) was one of the youngest and not fairing so well. If he didn't get transplants, he wouldn't make it. I have not seen them in a while because I hardly go there since I had the transplants, so I don't keep track of them anymore.

Good luck with the new baby when it comes. Whether the baby has CF or not, I am sure that you will love the baby no matter what!! Congratulations!
 
T

Transplantmommy

New member
I cannot speak from personal experience because I am a CFer and do not have any children with CF. I just wanted to #1: congratulate you on the pregnancy, #2: say that if the child having CF makes no difference in you keeping the baby or not, I would not get the amnio done, and #3: There is a rather larger Amish family that goes to the same CF clinic that I go to. They have I think like 9 (or more) children and MOST of them have CF. From what I have seen when I see them, there are more that are worse off than the others. There are some reaching into their teens and are fine and then there was one who (when the last time I saw them) was one of the youngest and not fairing so well. If he didn't get transplants, he wouldn't make it. I have not seen them in a while because I hardly go there since I had the transplants, so I don't keep track of them anymore.

Good luck with the new baby when it comes. Whether the baby has CF or not, I am sure that you will love the baby no matter what!! Congratulations!
 
T

Transplantmommy

New member
I cannot speak from personal experience because I am a CFer and do not have any children with CF. I just wanted to #1: congratulate you on the pregnancy, #2: say that if the child having CF makes no difference in you keeping the baby or not, I would not get the amnio done, and #3: There is a rather larger Amish family that goes to the same CF clinic that I go to. They have I think like 9 (or more) children and MOST of them have CF. From what I have seen when I see them, there are more that are worse off than the others. There are some reaching into their teens and are fine and then there was one who (when the last time I saw them) was one of the youngest and not fairing so well. If he didn't get transplants, he wouldn't make it. I have not seen them in a while because I hardly go there since I had the transplants, so I don't keep track of them anymore.

Good luck with the new baby when it comes. Whether the baby has CF or not, I am sure that you will love the baby no matter what!! Congratulations!
 
T

Transplantmommy

New member
I cannot speak from personal experience because I am a CFer and do not have any children with CF. I just wanted to #1: congratulate you on the pregnancy, #2: say that if the child having CF makes no difference in you keeping the baby or not, I would not get the amnio done, and #3: There is a rather larger Amish family that goes to the same CF clinic that I go to. They have I think like 9 (or more) children and MOST of them have CF. From what I have seen when I see them, there are more that are worse off than the others. There are some reaching into their teens and are fine and then there was one who (when the last time I saw them) was one of the youngest and not fairing so well. If he didn't get transplants, he wouldn't make it. I have not seen them in a while because I hardly go there since I had the transplants, so I don't keep track of them anymore.
<br />
<br />Good luck with the new baby when it comes. Whether the baby has CF or not, I am sure that you will love the baby no matter what!! Congratulations!
 
M

Mommy2Alysa

New member
CONGRATULATIONS!!!!

I have two children with CF. I found out I was preg with Kiana a month after Alysa was diagnosed and I was terrified. We went and got the amnio done (even though the result didn't matter) because I didn't feel I could go 9 months wondering if the little darling was going to be sick. I wanted to have a few months before she was born if the result was positive to get over the shock, cry, kick, scream (whatever needed to be done).

All in all, I am glad I found out.

As far as the symptoms go - I don't think you can tell how they are going to react. The girls have the same mutations and it seems like Kiana's CF affects her digestive system more then Alysa who (even though she is on enzymes) has more issues with her lungs. They say not to put CF children together but with siblings I find that impossible.

For their treatments - Kiana isn't on physio yet but when she is my husband and I will "each grab a kid" and do it together.

Comforting thought - When we found out about Kiana I thought that maybe she was born "sick" to help Alysa. The girls can comfort/support/understand each other in a way that my husband and I cant. They will have a bond like no other "normal" siblings. I am not religious but I feel that you will not be given more then you can handle.
 
M

Mommy2Alysa

New member
CONGRATULATIONS!!!!

I have two children with CF. I found out I was preg with Kiana a month after Alysa was diagnosed and I was terrified. We went and got the amnio done (even though the result didn't matter) because I didn't feel I could go 9 months wondering if the little darling was going to be sick. I wanted to have a few months before she was born if the result was positive to get over the shock, cry, kick, scream (whatever needed to be done).

All in all, I am glad I found out.

As far as the symptoms go - I don't think you can tell how they are going to react. The girls have the same mutations and it seems like Kiana's CF affects her digestive system more then Alysa who (even though she is on enzymes) has more issues with her lungs. They say not to put CF children together but with siblings I find that impossible.

For their treatments - Kiana isn't on physio yet but when she is my husband and I will "each grab a kid" and do it together.

Comforting thought - When we found out about Kiana I thought that maybe she was born "sick" to help Alysa. The girls can comfort/support/understand each other in a way that my husband and I cant. They will have a bond like no other "normal" siblings. I am not religious but I feel that you will not be given more then you can handle.
 
M

Mommy2Alysa

New member
CONGRATULATIONS!!!!

I have two children with CF. I found out I was preg with Kiana a month after Alysa was diagnosed and I was terrified. We went and got the amnio done (even though the result didn't matter) because I didn't feel I could go 9 months wondering if the little darling was going to be sick. I wanted to have a few months before she was born if the result was positive to get over the shock, cry, kick, scream (whatever needed to be done).

All in all, I am glad I found out.

As far as the symptoms go - I don't think you can tell how they are going to react. The girls have the same mutations and it seems like Kiana's CF affects her digestive system more then Alysa who (even though she is on enzymes) has more issues with her lungs. They say not to put CF children together but with siblings I find that impossible.

For their treatments - Kiana isn't on physio yet but when she is my husband and I will "each grab a kid" and do it together.

Comforting thought - When we found out about Kiana I thought that maybe she was born "sick" to help Alysa. The girls can comfort/support/understand each other in a way that my husband and I cant. They will have a bond like no other "normal" siblings. I am not religious but I feel that you will not be given more then you can handle.
 
M

Mommy2Alysa

New member
CONGRATULATIONS!!!!

I have two children with CF. I found out I was preg with Kiana a month after Alysa was diagnosed and I was terrified. We went and got the amnio done (even though the result didn't matter) because I didn't feel I could go 9 months wondering if the little darling was going to be sick. I wanted to have a few months before she was born if the result was positive to get over the shock, cry, kick, scream (whatever needed to be done).

All in all, I am glad I found out.

As far as the symptoms go - I don't think you can tell how they are going to react. The girls have the same mutations and it seems like Kiana's CF affects her digestive system more then Alysa who (even though she is on enzymes) has more issues with her lungs. They say not to put CF children together but with siblings I find that impossible.

For their treatments - Kiana isn't on physio yet but when she is my husband and I will "each grab a kid" and do it together.

Comforting thought - When we found out about Kiana I thought that maybe she was born "sick" to help Alysa. The girls can comfort/support/understand each other in a way that my husband and I cant. They will have a bond like no other "normal" siblings. I am not religious but I feel that you will not be given more then you can handle.
 
M

Mommy2Alysa

New member
CONGRATULATIONS!!!!
<br />
<br />I have two children with CF. I found out I was preg with Kiana a month after Alysa was diagnosed and I was terrified. We went and got the amnio done (even though the result didn't matter) because I didn't feel I could go 9 months wondering if the little darling was going to be sick. I wanted to have a few months before she was born if the result was positive to get over the shock, cry, kick, scream (whatever needed to be done).
<br />
<br />All in all, I am glad I found out.
<br />
<br />As far as the symptoms go - I don't think you can tell how they are going to react. The girls have the same mutations and it seems like Kiana's CF affects her digestive system more then Alysa who (even though she is on enzymes) has more issues with her lungs. They say not to put CF children together but with siblings I find that impossible.
<br />
<br />For their treatments - Kiana isn't on physio yet but when she is my husband and I will "each grab a kid" and do it together.
<br />
<br />Comforting thought - When we found out about Kiana I thought that maybe she was born "sick" to help Alysa. The girls can comfort/support/understand each other in a way that my husband and I cant. They will have a bond like no other "normal" siblings. I am not religious but I feel that you will not be given more then you can handle.
<br />
 
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