Terminating pregnancy?

[nicole781]

I'll chime in on ths subject too.

I was in your position about a year ago. We were a little concerned about our baby's nucheal (sp?) fold (totally unrelated to CF), so we decided to have amnio.

When we spoke to the doctor, some things came up, and we decided that we should be testing the baby for CF also. Honestly, I'll never forget the look on the doctor's face while we were discussing the possibility of CF. He looked scared, and told us without telling us that if he was in a situation where there was a possible CF diagnosis, he would terminate.

I really didn't think much of it, I was so sure that everything was going to be ok, and i was worrying over nothing. Not so lucky.

When I got the call that our baby had CF, my heart broke, and we were faced with a difficult decision.

We decided not to terminate, but i was very nervous throughout the rest of my pregnancy. She was born happy and healthy and beautiful!

She's my first child, so I really don't know any different, but although it is difficult, it is nowhere near impossible. She takes pills with every meal, we do nebulizers 2 times a day, and we do chest PTs twice a day also.

Time consuming? yes. Worth it? Every minute.

The decision is up to you, but from where i am now vs. where i was a year ago, it's a lot less scary. The new treatments coming out are so promising. No matter where this journey takes us, I'm proud to be a part of this beautiful little one's life.

PS. If you need to talk more, please feel free to PM me.

 

[nicole781]

I'll chime in on ths subject too.

I was in your position about a year ago. We were a little concerned about our baby's nucheal (sp?) fold (totally unrelated to CF), so we decided to have amnio.

When we spoke to the doctor, some things came up, and we decided that we should be testing the baby for CF also. Honestly, I'll never forget the look on the doctor's face while we were discussing the possibility of CF. He looked scared, and told us without telling us that if he was in a situation where there was a possible CF diagnosis, he would terminate.

I really didn't think much of it, I was so sure that everything was going to be ok, and i was worrying over nothing. Not so lucky.

When I got the call that our baby had CF, my heart broke, and we were faced with a difficult decision.

We decided not to terminate, but i was very nervous throughout the rest of my pregnancy. She was born happy and healthy and beautiful!

She's my first child, so I really don't know any different, but although it is difficult, it is nowhere near impossible. She takes pills with every meal, we do nebulizers 2 times a day, and we do chest PTs twice a day also.

Time consuming? yes. Worth it? Every minute.

The decision is up to you, but from where i am now vs. where i was a year ago, it's a lot less scary. The new treatments coming out are so promising. No matter where this journey takes us, I'm proud to be a part of this beautiful little one's life.

PS. If you need to talk more, please feel free to PM me.

 

[nicole781]

I'll chime in on ths subject too.

I was in your position about a year ago. We were a little concerned about our baby's nucheal (sp?) fold (totally unrelated to CF), so we decided to have amnio.

When we spoke to the doctor, some things came up, and we decided that we should be testing the baby for CF also. Honestly, I'll never forget the look on the doctor's face while we were discussing the possibility of CF. He looked scared, and told us without telling us that if he was in a situation where there was a possible CF diagnosis, he would terminate.

I really didn't think much of it, I was so sure that everything was going to be ok, and i was worrying over nothing. Not so lucky.

When I got the call that our baby had CF, my heart broke, and we were faced with a difficult decision.

We decided not to terminate, but i was very nervous throughout the rest of my pregnancy. She was born happy and healthy and beautiful!

She's my first child, so I really don't know any different, but although it is difficult, it is nowhere near impossible. She takes pills with every meal, we do nebulizers 2 times a day, and we do chest PTs twice a day also.

Time consuming? yes. Worth it? Every minute.

The decision is up to you, but from where i am now vs. where i was a year ago, it's a lot less scary. The new treatments coming out are so promising. No matter where this journey takes us, I'm proud to be a part of this beautiful little one's life.

PS. If you need to talk more, please feel free to PM me.

 

[nicole781]

I'll chime in on ths subject too.

I was in your position about a year ago. We were a little concerned about our baby's nucheal (sp?) fold (totally unrelated to CF), so we decided to have amnio.

When we spoke to the doctor, some things came up, and we decided that we should be testing the baby for CF also. Honestly, I'll never forget the look on the doctor's face while we were discussing the possibility of CF. He looked scared, and told us without telling us that if he was in a situation where there was a possible CF diagnosis, he would terminate.

I really didn't think much of it, I was so sure that everything was going to be ok, and i was worrying over nothing. Not so lucky.

When I got the call that our baby had CF, my heart broke, and we were faced with a difficult decision.

We decided not to terminate, but i was very nervous throughout the rest of my pregnancy. She was born happy and healthy and beautiful!

She's my first child, so I really don't know any different, but although it is difficult, it is nowhere near impossible. She takes pills with every meal, we do nebulizers 2 times a day, and we do chest PTs twice a day also.

Time consuming? yes. Worth it? Every minute.

The decision is up to you, but from where i am now vs. where i was a year ago, it's a lot less scary. The new treatments coming out are so promising. No matter where this journey takes us, I'm proud to be a part of this beautiful little one's life.

PS. If you need to talk more, please feel free to PM me.

 

[nicole781]

I'll chime in on ths subject too.
<br />
<br />I was in your position about a year ago. We were a little concerned about our baby's nucheal (sp?) fold (totally unrelated to CF), so we decided to have amnio.
<br />
<br />When we spoke to the doctor, some things came up, and we decided that we should be testing the baby for CF also. Honestly, I'll never forget the look on the doctor's face while we were discussing the possibility of CF. He looked scared, and told us without telling us that if he was in a situation where there was a possible CF diagnosis, he would terminate.
<br />
<br />I really didn't think much of it, I was so sure that everything was going to be ok, and i was worrying over nothing. Not so lucky.
<br />
<br />When I got the call that our baby had CF, my heart broke, and we were faced with a difficult decision.
<br />
<br />We decided not to terminate, but i was very nervous throughout the rest of my pregnancy. She was born happy and healthy and beautiful!
<br />
<br />She's my first child, so I really don't know any different, but although it is difficult, it is nowhere near impossible. She takes pills with every meal, we do nebulizers 2 times a day, and we do chest PTs twice a day also.
<br />
<br />Time consuming? yes. Worth it? Every minute.
<br />
<br />The decision is up to you, but from where i am now vs. where i was a year ago, it's a lot less scary. The new treatments coming out are so promising. No matter where this journey takes us, I'm proud to be a part of this beautiful little one's life.
<br />
<br />PS. If you need to talk more, please feel free to PM me.

 

[Alyssa]

Boy of boy... I'm not sure what I can add that hasn't already been said... but I want to just emphasis two things... yes, many people are living well into adulthood, starting (and having available now) the newer treatments is making a big difference -- I personally know many with CF who are well into their 50' 60's and 70's now and as others have pointed out, they didn't even have the benefits of the medications until recent years. The other thing that I want to reiterate is the fact that your baby has the X gene... that is HUGE ! Because they are so close to getting that drug that will pretty much make everything function correctly. Ok... maybe I have more than two points.... here's another one... doctors don't know it all... <b>and a lot of them have outdated information in their heads.... for example, did the doctor that recommended you terminate even know about the PTC124? I'm all for the sharing of information and giving you a choice and letting you make an informed decision.. it just seems to me that maybe he doesn't have all the facts to help you make an informed decision.</b>
Welcome to the site! If you have the time, you can check out my blog... my kids are 19 and 21 years old and are doing very very well.

 

[Alyssa]

Boy of boy... I'm not sure what I can add that hasn't already been said... but I want to just emphasis two things... yes, many people are living well into adulthood, starting (and having available now) the newer treatments is making a big difference -- I personally know many with CF who are well into their 50' 60's and 70's now and as others have pointed out, they didn't even have the benefits of the medications until recent years. The other thing that I want to reiterate is the fact that your baby has the X gene... that is HUGE ! Because they are so close to getting that drug that will pretty much make everything function correctly. Ok... maybe I have more than two points.... here's another one... doctors don't know it all... <b>and a lot of them have outdated information in their heads.... for example, did the doctor that recommended you terminate even know about the PTC124? I'm all for the sharing of information and giving you a choice and letting you make an informed decision.. it just seems to me that maybe he doesn't have all the facts to help you make an informed decision.</b>
Welcome to the site! If you have the time, you can check out my blog... my kids are 19 and 21 years old and are doing very very well.

 

[Alyssa]

Boy of boy... I'm not sure what I can add that hasn't already been said... but I want to just emphasis two things... yes, many people are living well into adulthood, starting (and having available now) the newer treatments is making a big difference -- I personally know many with CF who are well into their 50' 60's and 70's now and as others have pointed out, they didn't even have the benefits of the medications until recent years. The other thing that I want to reiterate is the fact that your baby has the X gene... that is HUGE ! Because they are so close to getting that drug that will pretty much make everything function correctly. Ok... maybe I have more than two points.... here's another one... doctors don't know it all... <b>and a lot of them have outdated information in their heads.... for example, did the doctor that recommended you terminate even know about the PTC124? I'm all for the sharing of information and giving you a choice and letting you make an informed decision.. it just seems to me that maybe he doesn't have all the facts to help you make an informed decision.</b>
Welcome to the site! If you have the time, you can check out my blog... my kids are 19 and 21 years old and are doing very very well.

 

[Alyssa]

Boy of boy... I'm not sure what I can add that hasn't already been said... but I want to just emphasis two things... yes, many people are living well into adulthood, starting (and having available now) the newer treatments is making a big difference -- I personally know many with CF who are well into their 50' 60's and 70's now and as others have pointed out, they didn't even have the benefits of the medications until recent years. The other thing that I want to reiterate is the fact that your baby has the X gene... that is HUGE ! Because they are so close to getting that drug that will pretty much make everything function correctly. Ok... maybe I have more than two points.... here's another one... doctors don't know it all... <b>and a lot of them have outdated information in their heads.... for example, did the doctor that recommended you terminate even know about the PTC124? I'm all for the sharing of information and giving you a choice and letting you make an informed decision.. it just seems to me that maybe he doesn't have all the facts to help you make an informed decision.</b>
Welcome to the site! If you have the time, you can check out my blog... my kids are 19 and 21 years old and are doing very very well.

 

[Alyssa]

Boy of boy... I'm not sure what I can add that hasn't already been said... but I want to just emphasis two things... yes, many people are living well into adulthood, starting (and having available now) the newer treatments is making a big difference -- I personally know many with CF who are well into their 50' 60's and 70's now and as others have pointed out, they didn't even have the benefits of the medications until recent years. The other thing that I want to reiterate is the fact that your baby has the X gene... that is HUGE ! Because they are so close to getting that drug that will pretty much make everything function correctly. Ok... maybe I have more than two points.... here's another one... doctors don't know it all... <b>and a lot of them have outdated information in their heads.... for example, did the doctor that recommended you terminate even know about the PTC124? I'm all for the sharing of information and giving you a choice and letting you make an informed decision.. it just seems to me that maybe he doesn't have all the facts to help you make an informed decision.</b>
<br />Welcome to the site! If you have the time, you can check out my blog... my kids are 19 and 21 years old and are doing very very well.

 

[laxgirl]

Thank you all so much for your responses. Tonight we spoke with the head of the CF center where we will be going (provided we keep leaning in that direction). She was excellent and really optimistic. She told me in her 13 years at the center, she only knows of one family that decided to terminate so that was encouraging. She also said their goal is to keep kids as healthy as possible and at the nearest children's hospital, which is completely full right now, there are only two children being treated for CF, both of whom will be discharged soon with over 90% lung function. We are feeling much more comfortable with the idea of adjusting instead of terminating, and all of your comments are truly so helpful! Thanks again.
Debbie

 

[laxgirl]

Thank you all so much for your responses. Tonight we spoke with the head of the CF center where we will be going (provided we keep leaning in that direction). She was excellent and really optimistic. She told me in her 13 years at the center, she only knows of one family that decided to terminate so that was encouraging. She also said their goal is to keep kids as healthy as possible and at the nearest children's hospital, which is completely full right now, there are only two children being treated for CF, both of whom will be discharged soon with over 90% lung function. We are feeling much more comfortable with the idea of adjusting instead of terminating, and all of your comments are truly so helpful! Thanks again.
Debbie

 

[laxgirl]

Thank you all so much for your responses. Tonight we spoke with the head of the CF center where we will be going (provided we keep leaning in that direction). She was excellent and really optimistic. She told me in her 13 years at the center, she only knows of one family that decided to terminate so that was encouraging. She also said their goal is to keep kids as healthy as possible and at the nearest children's hospital, which is completely full right now, there are only two children being treated for CF, both of whom will be discharged soon with over 90% lung function. We are feeling much more comfortable with the idea of adjusting instead of terminating, and all of your comments are truly so helpful! Thanks again.
Debbie

 

[laxgirl]

Thank you all so much for your responses. Tonight we spoke with the head of the CF center where we will be going (provided we keep leaning in that direction). She was excellent and really optimistic. She told me in her 13 years at the center, she only knows of one family that decided to terminate so that was encouraging. She also said their goal is to keep kids as healthy as possible and at the nearest children's hospital, which is completely full right now, there are only two children being treated for CF, both of whom will be discharged soon with over 90% lung function. We are feeling much more comfortable with the idea of adjusting instead of terminating, and all of your comments are truly so helpful! Thanks again.
Debbie

 

[laxgirl]

Thank you all so much for your responses. Tonight we spoke with the head of the CF center where we will be going (provided we keep leaning in that direction). She was excellent and really optimistic. She told me in her 13 years at the center, she only knows of one family that decided to terminate so that was encouraging. She also said their goal is to keep kids as healthy as possible and at the nearest children's hospital, which is completely full right now, there are only two children being treated for CF, both of whom will be discharged soon with over 90% lung function. We are feeling much more comfortable with the idea of adjusting instead of terminating, and all of your comments are truly so helpful! Thanks again.
<br />Debbie

 

[CartersMom]

All I can say is that my two year old CF son, is the light of my life. He is snuggled in beside me right now, happy and content as can be. It is more work, it is more stress, it can still be overwhelming...but like others have said before me, it does bring a totally new perspective to your life. You appreciate every moment more. We are so motivated to do all we can to help fight this disease! Just my opinion...I think it is important to prevent a child having this condition if you know you can, but could never terminate because of CF. My child is surrounded by so many people that love him, and he has become a very loving, affectionate little man. (We have just applied to the IVF program to try for our second child.) My thoughts and prayers are with you.

 

[CartersMom]

All I can say is that my two year old CF son, is the light of my life. He is snuggled in beside me right now, happy and content as can be. It is more work, it is more stress, it can still be overwhelming...but like others have said before me, it does bring a totally new perspective to your life. You appreciate every moment more. We are so motivated to do all we can to help fight this disease! Just my opinion...I think it is important to prevent a child having this condition if you know you can, but could never terminate because of CF. My child is surrounded by so many people that love him, and he has become a very loving, affectionate little man. (We have just applied to the IVF program to try for our second child.) My thoughts and prayers are with you.

 

[CartersMom]

All I can say is that my two year old CF son, is the light of my life. He is snuggled in beside me right now, happy and content as can be. It is more work, it is more stress, it can still be overwhelming...but like others have said before me, it does bring a totally new perspective to your life. You appreciate every moment more. We are so motivated to do all we can to help fight this disease! Just my opinion...I think it is important to prevent a child having this condition if you know you can, but could never terminate because of CF. My child is surrounded by so many people that love him, and he has become a very loving, affectionate little man. (We have just applied to the IVF program to try for our second child.) My thoughts and prayers are with you.

 

[CartersMom]

All I can say is that my two year old CF son, is the light of my life. He is snuggled in beside me right now, happy and content as can be. It is more work, it is more stress, it can still be overwhelming...but like others have said before me, it does bring a totally new perspective to your life. You appreciate every moment more. We are so motivated to do all we can to help fight this disease! Just my opinion...I think it is important to prevent a child having this condition if you know you can, but could never terminate because of CF. My child is surrounded by so many people that love him, and he has become a very loving, affectionate little man. (We have just applied to the IVF program to try for our second child.) My thoughts and prayers are with you.

 

[CartersMom]

All I can say is that my two year old CF son, is the light of my life. He is snuggled in beside me right now, happy and content as can be. It is more work, it is more stress, it can still be overwhelming...but like others have said before me, it does bring a totally new perspective to your life. You appreciate every moment more. We are so motivated to do all we can to help fight this disease! Just my opinion...I think it is important to prevent a child having this condition if you know you can, but could never terminate because of CF. My child is surrounded by so many people that love him, and he has become a very loving, affectionate little man. (We have just applied to the IVF program to try for our second child.) My thoughts and prayers are with you.