Amnio test said my baby is positive for CF

[NYCLawGirl]

Peanut,

I don't want to add any fuel to the fire here, I know how scared you must be and how difficult this is. All I can say is it is completely up to you and your husband and neither answer is "right" unless it is right for you.

That said, I know people who have chosen to end a pregnancy because of CF and I can't say I judge them at all. Caring for a child is not easy (as you know); caring for a child with chronic illness is even harder. Illness can be tough on the caregiver, tough on the patient, tough on siblings and tough on a marriage. These are definitely all things to consider...I think you would be doing yourself and your as yet unborn child a disservice not to think about what a child with CF will mean for everyone involved. People on this forum are absolutely correct to point out that science has made living with CF much easier, and CF is unique in every individual. That does not mean you should have this child believing that he or she is being born in a time when CF is no longer a major issue. Life with CF is always a balance: hope for the best, but be prepared for the worst. It is still a devastating disease that continues to claim way too many lives.

I say this as a woman with CF who has led a rich and fulfilling life and who savors absolutely everyday. Has CF been hard? Absolutely, and I imagine it will get harder. Has it been worth it? Unequivocally yes. I work full time, live on my own in New York City, and am blessed to have amazing medical care. In many ways I think CF has made me more aware of how precious life is, and like many people on this forum I wouldn't trade in my life for anyone elses, no matter how healthy.

Either way, have you considered getting genetic counseling and/or a therapist to help you sort through some of these issues? It is nice to talk these things over in a safe, objective environment and obviously it is very very hard for most of us on here to be "objective" about CF. You are in my thoughts and I know things will work out for you...it's amazing how much strength people find in themselves when they're put to the test!

 

[NYCLawGirl]

Peanut,

I don't want to add any fuel to the fire here, I know how scared you must be and how difficult this is. All I can say is it is completely up to you and your husband and neither answer is "right" unless it is right for you.

That said, I know people who have chosen to end a pregnancy because of CF and I can't say I judge them at all. Caring for a child is not easy (as you know); caring for a child with chronic illness is even harder. Illness can be tough on the caregiver, tough on the patient, tough on siblings and tough on a marriage. These are definitely all things to consider...I think you would be doing yourself and your as yet unborn child a disservice not to think about what a child with CF will mean for everyone involved. People on this forum are absolutely correct to point out that science has made living with CF much easier, and CF is unique in every individual. That does not mean you should have this child believing that he or she is being born in a time when CF is no longer a major issue. Life with CF is always a balance: hope for the best, but be prepared for the worst. It is still a devastating disease that continues to claim way too many lives.

I say this as a woman with CF who has led a rich and fulfilling life and who savors absolutely everyday. Has CF been hard? Absolutely, and I imagine it will get harder. Has it been worth it? Unequivocally yes. I work full time, live on my own in New York City, and am blessed to have amazing medical care. In many ways I think CF has made me more aware of how precious life is, and like many people on this forum I wouldn't trade in my life for anyone elses, no matter how healthy.

Either way, have you considered getting genetic counseling and/or a therapist to help you sort through some of these issues? It is nice to talk these things over in a safe, objective environment and obviously it is very very hard for most of us on here to be "objective" about CF. You are in my thoughts and I know things will work out for you...it's amazing how much strength people find in themselves when they're put to the test!

 

[NYCLawGirl]

Peanut,

I don't want to add any fuel to the fire here, I know how scared you must be and how difficult this is. All I can say is it is completely up to you and your husband and neither answer is "right" unless it is right for you.

That said, I know people who have chosen to end a pregnancy because of CF and I can't say I judge them at all. Caring for a child is not easy (as you know); caring for a child with chronic illness is even harder. Illness can be tough on the caregiver, tough on the patient, tough on siblings and tough on a marriage. These are definitely all things to consider...I think you would be doing yourself and your as yet unborn child a disservice not to think about what a child with CF will mean for everyone involved. People on this forum are absolutely correct to point out that science has made living with CF much easier, and CF is unique in every individual. That does not mean you should have this child believing that he or she is being born in a time when CF is no longer a major issue. Life with CF is always a balance: hope for the best, but be prepared for the worst. It is still a devastating disease that continues to claim way too many lives.

I say this as a woman with CF who has led a rich and fulfilling life and who savors absolutely everyday. Has CF been hard? Absolutely, and I imagine it will get harder. Has it been worth it? Unequivocally yes. I work full time, live on my own in New York City, and am blessed to have amazing medical care. In many ways I think CF has made me more aware of how precious life is, and like many people on this forum I wouldn't trade in my life for anyone elses, no matter how healthy.

Either way, have you considered getting genetic counseling and/or a therapist to help you sort through some of these issues? It is nice to talk these things over in a safe, objective environment and obviously it is very very hard for most of us on here to be "objective" about CF. You are in my thoughts and I know things will work out for you...it's amazing how much strength people find in themselves when they're put to the test!

 

[NYCLawGirl]

Peanut,

I don't want to add any fuel to the fire here, I know how scared you must be and how difficult this is. All I can say is it is completely up to you and your husband and neither answer is "right" unless it is right for you.

That said, I know people who have chosen to end a pregnancy because of CF and I can't say I judge them at all. Caring for a child is not easy (as you know); caring for a child with chronic illness is even harder. Illness can be tough on the caregiver, tough on the patient, tough on siblings and tough on a marriage. These are definitely all things to consider...I think you would be doing yourself and your as yet unborn child a disservice not to think about what a child with CF will mean for everyone involved. People on this forum are absolutely correct to point out that science has made living with CF much easier, and CF is unique in every individual. That does not mean you should have this child believing that he or she is being born in a time when CF is no longer a major issue. Life with CF is always a balance: hope for the best, but be prepared for the worst. It is still a devastating disease that continues to claim way too many lives.

I say this as a woman with CF who has led a rich and fulfilling life and who savors absolutely everyday. Has CF been hard? Absolutely, and I imagine it will get harder. Has it been worth it? Unequivocally yes. I work full time, live on my own in New York City, and am blessed to have amazing medical care. In many ways I think CF has made me more aware of how precious life is, and like many people on this forum I wouldn't trade in my life for anyone elses, no matter how healthy.

Either way, have you considered getting genetic counseling and/or a therapist to help you sort through some of these issues? It is nice to talk these things over in a safe, objective environment and obviously it is very very hard for most of us on here to be "objective" about CF. You are in my thoughts and I know things will work out for you...it's amazing how much strength people find in themselves when they're put to the test!

 

[NYCLawGirl]

Peanut,

I don't want to add any fuel to the fire here, I know how scared you must be and how difficult this is. All I can say is it is completely up to you and your husband and neither answer is "right" unless it is right for you.

That said, I know people who have chosen to end a pregnancy because of CF and I can't say I judge them at all. Caring for a child is not easy (as you know); caring for a child with chronic illness is even harder. Illness can be tough on the caregiver, tough on the patient, tough on siblings and tough on a marriage. These are definitely all things to consider...I think you would be doing yourself and your as yet unborn child a disservice not to think about what a child with CF will mean for everyone involved. People on this forum are absolutely correct to point out that science has made living with CF much easier, and CF is unique in every individual. That does not mean you should have this child believing that he or she is being born in a time when CF is no longer a major issue. Life with CF is always a balance: hope for the best, but be prepared for the worst. It is still a devastating disease that continues to claim way too many lives.

I say this as a woman with CF who has led a rich and fulfilling life and who savors absolutely everyday. Has CF been hard? Absolutely, and I imagine it will get harder. Has it been worth it? Unequivocally yes. I work full time, live on my own in New York City, and am blessed to have amazing medical care. In many ways I think CF has made me more aware of how precious life is, and like many people on this forum I wouldn't trade in my life for anyone elses, no matter how healthy.

Either way, have you considered getting genetic counseling and/or a therapist to help you sort through some of these issues? It is nice to talk these things over in a safe, objective environment and obviously it is very very hard for most of us on here to be "objective" about CF. You are in my thoughts and I know things will work out for you...it's amazing how much strength people find in themselves when they're put to the test!

 

[nicole781]

Hey Peanut,

I'm going to agree with everyone else and just say to take a deep breath. I was in your situation about a year ago.

I had gotten tested, found out i was a carrier of CF, as is my boyfriend, and had to have an amnio. We had another health scare so that was why we had gotten the amnio. I honestly wasn't even concerned about coming back positive for CF. It was so out of my realm of thought, I never thought that I'd ever have a baby who wasn't perfectly healthy. I didn't think I could handle taking care of a baby that wasn't perfectly healthy, I didn't think I could be that strong.

When I got the call that the baby had tested positive for CF, I was devastated. They also gave us the option to terminate, and I have to say, I honestly considered it. I was looking on the internet for information about CF, and I was scared.

I happened upon this site, and I must have sat up until 4 in the morning reading everything i could. I cried, but I learned. We decided to keep the baby.

Right now we have a beautiful 7 month old little bean by the name of Alexa. She is the joy of my life. Yeah, she's a little different than other babies her age.....breathing treatments, enzymes, LOTS of food, but I couldn't imagine life without her now. Now, this is the new normal for us....adding butter to baby food, and putting enzymes in applesauce (which she loves!) for her before a bottle.

I'm not here to tell you what to do.....either way you need to do what you feel is right. But know that we're all here for you. This community is absolutely amazing. If you need ANYTHING, you can email me at my personal email address.

nicole_conley@comcast.net

I'm sure i'm speaking for everyone here when I say that we're all here to help you through this journey.

 

[nicole781]

Hey Peanut,

I'm going to agree with everyone else and just say to take a deep breath. I was in your situation about a year ago.

I had gotten tested, found out i was a carrier of CF, as is my boyfriend, and had to have an amnio. We had another health scare so that was why we had gotten the amnio. I honestly wasn't even concerned about coming back positive for CF. It was so out of my realm of thought, I never thought that I'd ever have a baby who wasn't perfectly healthy. I didn't think I could handle taking care of a baby that wasn't perfectly healthy, I didn't think I could be that strong.

When I got the call that the baby had tested positive for CF, I was devastated. They also gave us the option to terminate, and I have to say, I honestly considered it. I was looking on the internet for information about CF, and I was scared.

I happened upon this site, and I must have sat up until 4 in the morning reading everything i could. I cried, but I learned. We decided to keep the baby.

Right now we have a beautiful 7 month old little bean by the name of Alexa. She is the joy of my life. Yeah, she's a little different than other babies her age.....breathing treatments, enzymes, LOTS of food, but I couldn't imagine life without her now. Now, this is the new normal for us....adding butter to baby food, and putting enzymes in applesauce (which she loves!) for her before a bottle.

I'm not here to tell you what to do.....either way you need to do what you feel is right. But know that we're all here for you. This community is absolutely amazing. If you need ANYTHING, you can email me at my personal email address.

nicole_conley@comcast.net

I'm sure i'm speaking for everyone here when I say that we're all here to help you through this journey.

 

[nicole781]

Hey Peanut,

I'm going to agree with everyone else and just say to take a deep breath. I was in your situation about a year ago.

I had gotten tested, found out i was a carrier of CF, as is my boyfriend, and had to have an amnio. We had another health scare so that was why we had gotten the amnio. I honestly wasn't even concerned about coming back positive for CF. It was so out of my realm of thought, I never thought that I'd ever have a baby who wasn't perfectly healthy. I didn't think I could handle taking care of a baby that wasn't perfectly healthy, I didn't think I could be that strong.

When I got the call that the baby had tested positive for CF, I was devastated. They also gave us the option to terminate, and I have to say, I honestly considered it. I was looking on the internet for information about CF, and I was scared.

I happened upon this site, and I must have sat up until 4 in the morning reading everything i could. I cried, but I learned. We decided to keep the baby.

Right now we have a beautiful 7 month old little bean by the name of Alexa. She is the joy of my life. Yeah, she's a little different than other babies her age.....breathing treatments, enzymes, LOTS of food, but I couldn't imagine life without her now. Now, this is the new normal for us....adding butter to baby food, and putting enzymes in applesauce (which she loves!) for her before a bottle.

I'm not here to tell you what to do.....either way you need to do what you feel is right. But know that we're all here for you. This community is absolutely amazing. If you need ANYTHING, you can email me at my personal email address.

nicole_conley@comcast.net

I'm sure i'm speaking for everyone here when I say that we're all here to help you through this journey.

 

[nicole781]

Hey Peanut,

I'm going to agree with everyone else and just say to take a deep breath. I was in your situation about a year ago.

I had gotten tested, found out i was a carrier of CF, as is my boyfriend, and had to have an amnio. We had another health scare so that was why we had gotten the amnio. I honestly wasn't even concerned about coming back positive for CF. It was so out of my realm of thought, I never thought that I'd ever have a baby who wasn't perfectly healthy. I didn't think I could handle taking care of a baby that wasn't perfectly healthy, I didn't think I could be that strong.

When I got the call that the baby had tested positive for CF, I was devastated. They also gave us the option to terminate, and I have to say, I honestly considered it. I was looking on the internet for information about CF, and I was scared.

I happened upon this site, and I must have sat up until 4 in the morning reading everything i could. I cried, but I learned. We decided to keep the baby.

Right now we have a beautiful 7 month old little bean by the name of Alexa. She is the joy of my life. Yeah, she's a little different than other babies her age.....breathing treatments, enzymes, LOTS of food, but I couldn't imagine life without her now. Now, this is the new normal for us....adding butter to baby food, and putting enzymes in applesauce (which she loves!) for her before a bottle.

I'm not here to tell you what to do.....either way you need to do what you feel is right. But know that we're all here for you. This community is absolutely amazing. If you need ANYTHING, you can email me at my personal email address.

nicole_conley@comcast.net

I'm sure i'm speaking for everyone here when I say that we're all here to help you through this journey.

 

[nicole781]

Hey Peanut,

I'm going to agree with everyone else and just say to take a deep breath. I was in your situation about a year ago.

I had gotten tested, found out i was a carrier of CF, as is my boyfriend, and had to have an amnio. We had another health scare so that was why we had gotten the amnio. I honestly wasn't even concerned about coming back positive for CF. It was so out of my realm of thought, I never thought that I'd ever have a baby who wasn't perfectly healthy. I didn't think I could handle taking care of a baby that wasn't perfectly healthy, I didn't think I could be that strong.

When I got the call that the baby had tested positive for CF, I was devastated. They also gave us the option to terminate, and I have to say, I honestly considered it. I was looking on the internet for information about CF, and I was scared.

I happened upon this site, and I must have sat up until 4 in the morning reading everything i could. I cried, but I learned. We decided to keep the baby.

Right now we have a beautiful 7 month old little bean by the name of Alexa. She is the joy of my life. Yeah, she's a little different than other babies her age.....breathing treatments, enzymes, LOTS of food, but I couldn't imagine life without her now. Now, this is the new normal for us....adding butter to baby food, and putting enzymes in applesauce (which she loves!) for her before a bottle.

I'm not here to tell you what to do.....either way you need to do what you feel is right. But know that we're all here for you. This community is absolutely amazing. If you need ANYTHING, you can email me at my personal email address.

nicole_conley@comcast.net

I'm sure i'm speaking for everyone here when I say that we're all here to help you through this journey.

 

[JennifersHope]

I just wanted to say welcome to the forum, I can imagine how scared you must be and how sad you are.. and probably completly overwhelmed......

You liitle boy is almost the same age that one of the other CF moms on here's daughter is... She was born at 21 or 26 weeks I can't remember right now....

I know your worst fear is holding your son in your arms as he dies, but I have to tell you, he is already your son, and technically, he is already alive, with a heart beat, with eyes, kidneys liver and a full body..... I am not talking about abortion being right or wrong etc... I am just saying, there is no really making it go away, and by chosing to not have him be born, is not going to cancel out the fact of his life once exsisting.....

I have CF, it is hard, when I was born, CFers were dying very young, now they are having great chances at living into their 40's, just think if 40 years where they are going to be..

Life is never easy for anyone, disease or no disease..... and if you honestly feel like you are not women enough, (which I am sure you really are) you can always give your child to someone who is desperate to have a child......

I am just saying, maybe consider adoption or something ... I know a wonderful mom on here who adopted a child with CF and that kid is really really happy and doing well..

Thank you so much for posting and getting others insights.. and views.. You are so wise and level headed to seek help..

I will be praying for you

Jennifer

 

[JennifersHope]

I just wanted to say welcome to the forum, I can imagine how scared you must be and how sad you are.. and probably completly overwhelmed......

You liitle boy is almost the same age that one of the other CF moms on here's daughter is... She was born at 21 or 26 weeks I can't remember right now....

I know your worst fear is holding your son in your arms as he dies, but I have to tell you, he is already your son, and technically, he is already alive, with a heart beat, with eyes, kidneys liver and a full body..... I am not talking about abortion being right or wrong etc... I am just saying, there is no really making it go away, and by chosing to not have him be born, is not going to cancel out the fact of his life once exsisting.....

I have CF, it is hard, when I was born, CFers were dying very young, now they are having great chances at living into their 40's, just think if 40 years where they are going to be..

Life is never easy for anyone, disease or no disease..... and if you honestly feel like you are not women enough, (which I am sure you really are) you can always give your child to someone who is desperate to have a child......

I am just saying, maybe consider adoption or something ... I know a wonderful mom on here who adopted a child with CF and that kid is really really happy and doing well..

Thank you so much for posting and getting others insights.. and views.. You are so wise and level headed to seek help..

I will be praying for you

Jennifer

 

[JennifersHope]

I just wanted to say welcome to the forum, I can imagine how scared you must be and how sad you are.. and probably completly overwhelmed......

You liitle boy is almost the same age that one of the other CF moms on here's daughter is... She was born at 21 or 26 weeks I can't remember right now....

I know your worst fear is holding your son in your arms as he dies, but I have to tell you, he is already your son, and technically, he is already alive, with a heart beat, with eyes, kidneys liver and a full body..... I am not talking about abortion being right or wrong etc... I am just saying, there is no really making it go away, and by chosing to not have him be born, is not going to cancel out the fact of his life once exsisting.....

I have CF, it is hard, when I was born, CFers were dying very young, now they are having great chances at living into their 40's, just think if 40 years where they are going to be..

Life is never easy for anyone, disease or no disease..... and if you honestly feel like you are not women enough, (which I am sure you really are) you can always give your child to someone who is desperate to have a child......

I am just saying, maybe consider adoption or something ... I know a wonderful mom on here who adopted a child with CF and that kid is really really happy and doing well..

Thank you so much for posting and getting others insights.. and views.. You are so wise and level headed to seek help..

I will be praying for you

Jennifer

 

[JennifersHope]

I just wanted to say welcome to the forum, I can imagine how scared you must be and how sad you are.. and probably completly overwhelmed......

You liitle boy is almost the same age that one of the other CF moms on here's daughter is... She was born at 21 or 26 weeks I can't remember right now....

I know your worst fear is holding your son in your arms as he dies, but I have to tell you, he is already your son, and technically, he is already alive, with a heart beat, with eyes, kidneys liver and a full body..... I am not talking about abortion being right or wrong etc... I am just saying, there is no really making it go away, and by chosing to not have him be born, is not going to cancel out the fact of his life once exsisting.....

I have CF, it is hard, when I was born, CFers were dying very young, now they are having great chances at living into their 40's, just think if 40 years where they are going to be..

Life is never easy for anyone, disease or no disease..... and if you honestly feel like you are not women enough, (which I am sure you really are) you can always give your child to someone who is desperate to have a child......

I am just saying, maybe consider adoption or something ... I know a wonderful mom on here who adopted a child with CF and that kid is really really happy and doing well..

Thank you so much for posting and getting others insights.. and views.. You are so wise and level headed to seek help..

I will be praying for you

Jennifer

 

[JennifersHope]

I just wanted to say welcome to the forum, I can imagine how scared you must be and how sad you are.. and probably completly overwhelmed......

You liitle boy is almost the same age that one of the other CF moms on here's daughter is... She was born at 21 or 26 weeks I can't remember right now....

I know your worst fear is holding your son in your arms as he dies, but I have to tell you, he is already your son, and technically, he is already alive, with a heart beat, with eyes, kidneys liver and a full body..... I am not talking about abortion being right or wrong etc... I am just saying, there is no really making it go away, and by chosing to not have him be born, is not going to cancel out the fact of his life once exsisting.....

I have CF, it is hard, when I was born, CFers were dying very young, now they are having great chances at living into their 40's, just think if 40 years where they are going to be..

Life is never easy for anyone, disease or no disease..... and if you honestly feel like you are not women enough, (which I am sure you really are) you can always give your child to someone who is desperate to have a child......

I am just saying, maybe consider adoption or something ... I know a wonderful mom on here who adopted a child with CF and that kid is really really happy and doing well..

Thank you so much for posting and getting others insights.. and views.. You are so wise and level headed to seek help..

I will be praying for you

Jennifer

 

[Rebjane]

Just wanted to let you know I found out my daughter had CF when I was 23 weeks pregnant with her; over 5 years ago. Feel free to PM me if you need to. You've already gotten some good information already. It is a strange feeling to be pregnant and know your baby has CF inside you. I found I needed to talk about it alot, but most people could really not relate to that situation. So, here if ya need me. My daughter is 5 now and truly a joyful addition to our family. CF care is never-ending and time consuming, as well as stressful; but the reward of having my daughter is so much more. It's not a situation I would choose for our family/daughter but there are worse things that could be.

 

[Rebjane]

Just wanted to let you know I found out my daughter had CF when I was 23 weeks pregnant with her; over 5 years ago. Feel free to PM me if you need to. You've already gotten some good information already. It is a strange feeling to be pregnant and know your baby has CF inside you. I found I needed to talk about it alot, but most people could really not relate to that situation. So, here if ya need me. My daughter is 5 now and truly a joyful addition to our family. CF care is never-ending and time consuming, as well as stressful; but the reward of having my daughter is so much more. It's not a situation I would choose for our family/daughter but there are worse things that could be.

 

[Rebjane]

Just wanted to let you know I found out my daughter had CF when I was 23 weeks pregnant with her; over 5 years ago. Feel free to PM me if you need to. You've already gotten some good information already. It is a strange feeling to be pregnant and know your baby has CF inside you. I found I needed to talk about it alot, but most people could really not relate to that situation. So, here if ya need me. My daughter is 5 now and truly a joyful addition to our family. CF care is never-ending and time consuming, as well as stressful; but the reward of having my daughter is so much more. It's not a situation I would choose for our family/daughter but there are worse things that could be.

 

[Rebjane]

Just wanted to let you know I found out my daughter had CF when I was 23 weeks pregnant with her; over 5 years ago. Feel free to PM me if you need to. You've already gotten some good information already. It is a strange feeling to be pregnant and know your baby has CF inside you. I found I needed to talk about it alot, but most people could really not relate to that situation. So, here if ya need me. My daughter is 5 now and truly a joyful addition to our family. CF care is never-ending and time consuming, as well as stressful; but the reward of having my daughter is so much more. It's not a situation I would choose for our family/daughter but there are worse things that could be.

 

[Rebjane]

Just wanted to let you know I found out my daughter had CF when I was 23 weeks pregnant with her; over 5 years ago. Feel free to PM me if you need to. You've already gotten some good information already. It is a strange feeling to be pregnant and know your baby has CF inside you. I found I needed to talk about it alot, but most people could really not relate to that situation. So, here if ya need me. My daughter is 5 now and truly a joyful addition to our family. CF care is never-ending and time consuming, as well as stressful; but the reward of having my daughter is so much more. It's not a situation I would choose for our family/daughter but there are worse things that could be.