Amnio test said my baby is positive for CF

Hughett · Jan 23, 2008

Hi! Welcome to The Forum. There is tons of support here. When we first found out about our little John we came here to find answers. Lots of things talked about here scared the dookie out of me but I learned first hand that everyone is diffrent. Life can be normal for you and your little one.
<UL>There are sooo many things I want to say but the the number one thing is...ta da! Get a new doctor. One that knows what their talking about. I can't tell you how many family/hospital doctors I have been to that have no clue about CF. CF is not the end of the world for someone. Our little guy is as normal as can be. No problems whatsoever. One of his mutations is the delta. He is the best thing that has ever happened to my life besides my wife. Most of the time we forget he even has CF because he is as normal as any other kid. </UL>
<UL>Once again Please go to a CF doctor. They can tell you about your child more than any other doctor can. I know that if I was in your shoes (and I have been) I would ask a doctor that knows about it rather than trust the first doctor that talks to about it. We have all been in your shoes and cried ourselves to sleep at night when we first found out. Trust me. It only gets better from here. Grieving about the CF diagnosis lasts a short time. My little guy gives me tons of love and fun, and will for years and years to come. </UL>
Once again welcome to the forum. I hope you AND your baby can come here in the future and be welcomed by us all. Any questions you have, just ask! I can't speak for everyone but I for one love sharing my story and answering any questions that come up if I know the answer.

<UL>P.s. On a personal note, I have two extended family members who have been trying to adopt a child for years now. (one of which is picking up two autistic little ones this weekend! Yea!) They would never care if it had something as mild as CF. Just saying that there are people out there who can care for the child even if you can't.</UL>

Hughett · Jan 23, 2008

Hi! Welcome to The Forum. There is tons of support here. When we first found out about our little John we came here to find answers. Lots of things talked about here scared the dookie out of me but I learned first hand that everyone is diffrent. Life can be normal for you and your little one.
<UL>There are sooo many things I want to say but the the number one thing is...ta da! Get a new doctor. One that knows what their talking about. I can't tell you how many family/hospital doctors I have been to that have no clue about CF. CF is not the end of the world for someone. Our little guy is as normal as can be. No problems whatsoever. One of his mutations is the delta. He is the best thing that has ever happened to my life besides my wife. Most of the time we forget he even has CF because he is as normal as any other kid. </UL>
<UL>Once again Please go to a CF doctor. They can tell you about your child more than any other doctor can. I know that if I was in your shoes (and I have been) I would ask a doctor that knows about it rather than trust the first doctor that talks to about it. We have all been in your shoes and cried ourselves to sleep at night when we first found out. Trust me. It only gets better from here. Grieving about the CF diagnosis lasts a short time. My little guy gives me tons of love and fun, and will for years and years to come. </UL>
Once again welcome to the forum. I hope you AND your baby can come here in the future and be welcomed by us all. Any questions you have, just ask! I can't speak for everyone but I for one love sharing my story and answering any questions that come up if I know the answer.

<UL>P.s. On a personal note, I have two extended family members who have been trying to adopt a child for years now. (one of which is picking up two autistic little ones this weekend! Yea!) They would never care if it had something as mild as CF. Just saying that there are people out there who can care for the child even if you can't.</UL>

Hughett · Jan 23, 2008

Hi! Welcome to The Forum. There is tons of support here. When we first found out about our little John we came here to find answers. Lots of things talked about here scared the dookie out of me but I learned first hand that everyone is diffrent. Life can be normal for you and your little one.
<UL>There are sooo many things I want to say but the the number one thing is...ta da! Get a new doctor. One that knows what their talking about. I can't tell you how many family/hospital doctors I have been to that have no clue about CF. CF is not the end of the world for someone. Our little guy is as normal as can be. No problems whatsoever. One of his mutations is the delta. He is the best thing that has ever happened to my life besides my wife. Most of the time we forget he even has CF because he is as normal as any other kid. </UL>
<UL>Once again Please go to a CF doctor. They can tell you about your child more than any other doctor can. I know that if I was in your shoes (and I have been) I would ask a doctor that knows about it rather than trust the first doctor that talks to about it. We have all been in your shoes and cried ourselves to sleep at night when we first found out. Trust me. It only gets better from here. Grieving about the CF diagnosis lasts a short time. My little guy gives me tons of love and fun, and will for years and years to come. </UL>
Once again welcome to the forum. I hope you AND your baby can come here in the future and be welcomed by us all. Any questions you have, just ask! I can't speak for everyone but I for one love sharing my story and answering any questions that come up if I know the answer.

<UL>P.s. On a personal note, I have two extended family members who have been trying to adopt a child for years now. (one of which is picking up two autistic little ones this weekend! Yea!) They would never care if it had something as mild as CF. Just saying that there are people out there who can care for the child even if you can't.</UL>

Hughett · Jan 23, 2008

Hi! Welcome to The Forum. There is tons of support here. When we first found out about our little John we came here to find answers. Lots of things talked about here scared the dookie out of me but I learned first hand that everyone is diffrent. Life can be normal for you and your little one.
<UL>There are sooo many things I want to say but the the number one thing is...ta da! Get a new doctor. One that knows what their talking about. I can't tell you how many family/hospital doctors I have been to that have no clue about CF. CF is not the end of the world for someone. Our little guy is as normal as can be. No problems whatsoever. One of his mutations is the delta. He is the best thing that has ever happened to my life besides my wife. Most of the time we forget he even has CF because he is as normal as any other kid. </UL>
<UL>Once again Please go to a CF doctor. They can tell you about your child more than any other doctor can. I know that if I was in your shoes (and I have been) I would ask a doctor that knows about it rather than trust the first doctor that talks to about it. We have all been in your shoes and cried ourselves to sleep at night when we first found out. Trust me. It only gets better from here. Grieving about the CF diagnosis lasts a short time. My little guy gives me tons of love and fun, and will for years and years to come. </UL>
Once again welcome to the forum. I hope you AND your baby can come here in the future and be welcomed by us all. Any questions you have, just ask! I can't speak for everyone but I for one love sharing my story and answering any questions that come up if I know the answer.

<UL>P.s. On a personal note, I have two extended family members who have been trying to adopt a child for years now. (one of which is picking up two autistic little ones this weekend! Yea!) They would never care if it had something as mild as CF. Just saying that there are people out there who can care for the child even if you can't.</UL>

Hughett · Jan 23, 2008

Hi! Welcome to The Forum. There is tons of support here. When we first found out about our little John we came here to find answers. Lots of things talked about here scared the dookie out of me but I learned first hand that everyone is diffrent. Life can be normal for you and your little one.
<UL>There are sooo many things I want to say but the the number one thing is...ta da! Get a new doctor. One that knows what their talking about. I can't tell you how many family/hospital doctors I have been to that have no clue about CF. CF is not the end of the world for someone. Our little guy is as normal as can be. No problems whatsoever. One of his mutations is the delta. He is the best thing that has ever happened to my life besides my wife. Most of the time we forget he even has CF because he is as normal as any other kid. </UL>
<UL>Once again Please go to a CF doctor. They can tell you about your child more than any other doctor can. I know that if I was in your shoes (and I have been) I would ask a doctor that knows about it rather than trust the first doctor that talks to about it. We have all been in your shoes and cried ourselves to sleep at night when we first found out. Trust me. It only gets better from here. Grieving about the CF diagnosis lasts a short time. My little guy gives me tons of love and fun, and will for years and years to come. </UL>
Once again welcome to the forum. I hope you AND your baby can come here in the future and be welcomed by us all. Any questions you have, just ask! I can't speak for everyone but I for one love sharing my story and answering any questions that come up if I know the answer.

<UL>P.s. On a personal note, I have two extended family members who have been trying to adopt a child for years now. (one of which is picking up two autistic little ones this weekend! Yea!) They would never care if it had something as mild as CF. Just saying that there are people out there who can care for the child even if you can't.</UL>

Havoc · Jan 23, 2008

Wow, what doc tells people that D5F08= pain and suffering and having to watch your child die? I'm all about the right to choose, but I think it should be a reasonably well informed decision. I'm DF508 and R560T, 26 (and a half) and I just got my first course of Tobi, I don't do CPT, I don't do nebs. However, I am active, I have a job, I have a life. Seems everybody's got a little crap in their life if you really look for it. I say suck it up and make the most of it.

I ended up enjoying medicine (especially emergency medicine) and became a paramedic. My 1st cousin did the same and is now a nurse (and pregnant herself).

I suppose the question comes down to whether or not you think (and this would apply to anybody) you are capable of providing good care and support to a (potentially) sick child. I also think this question should be answered before anyone becomes pregnant, since, you never know your child (hopefully not but realistically) could become sick or injured, suffering far more than of a typical CFer. And so, my advice is: If you think you can't do it and do it well, then don't. If you are up for a challenge, go for it. It might be more rewarding than you think.

Havoc · Jan 23, 2008

Wow, what doc tells people that D5F08= pain and suffering and having to watch your child die? I'm all about the right to choose, but I think it should be a reasonably well informed decision. I'm DF508 and R560T, 26 (and a half) and I just got my first course of Tobi, I don't do CPT, I don't do nebs. However, I am active, I have a job, I have a life. Seems everybody's got a little crap in their life if you really look for it. I say suck it up and make the most of it.

I ended up enjoying medicine (especially emergency medicine) and became a paramedic. My 1st cousin did the same and is now a nurse (and pregnant herself).

I suppose the question comes down to whether or not you think (and this would apply to anybody) you are capable of providing good care and support to a (potentially) sick child. I also think this question should be answered before anyone becomes pregnant, since, you never know your child (hopefully not but realistically) could become sick or injured, suffering far more than of a typical CFer. And so, my advice is: If you think you can't do it and do it well, then don't. If you are up for a challenge, go for it. It might be more rewarding than you think.

Havoc · Jan 23, 2008

Wow, what doc tells people that D5F08= pain and suffering and having to watch your child die? I'm all about the right to choose, but I think it should be a reasonably well informed decision. I'm DF508 and R560T, 26 (and a half) and I just got my first course of Tobi, I don't do CPT, I don't do nebs. However, I am active, I have a job, I have a life. Seems everybody's got a little crap in their life if you really look for it. I say suck it up and make the most of it.

I ended up enjoying medicine (especially emergency medicine) and became a paramedic. My 1st cousin did the same and is now a nurse (and pregnant herself).

I suppose the question comes down to whether or not you think (and this would apply to anybody) you are capable of providing good care and support to a (potentially) sick child. I also think this question should be answered before anyone becomes pregnant, since, you never know your child (hopefully not but realistically) could become sick or injured, suffering far more than of a typical CFer. And so, my advice is: If you think you can't do it and do it well, then don't. If you are up for a challenge, go for it. It might be more rewarding than you think.

Havoc · Jan 23, 2008

Wow, what doc tells people that D5F08= pain and suffering and having to watch your child die? I'm all about the right to choose, but I think it should be a reasonably well informed decision. I'm DF508 and R560T, 26 (and a half) and I just got my first course of Tobi, I don't do CPT, I don't do nebs. However, I am active, I have a job, I have a life. Seems everybody's got a little crap in their life if you really look for it. I say suck it up and make the most of it.

I ended up enjoying medicine (especially emergency medicine) and became a paramedic. My 1st cousin did the same and is now a nurse (and pregnant herself).

I suppose the question comes down to whether or not you think (and this would apply to anybody) you are capable of providing good care and support to a (potentially) sick child. I also think this question should be answered before anyone becomes pregnant, since, you never know your child (hopefully not but realistically) could become sick or injured, suffering far more than of a typical CFer. And so, my advice is: If you think you can't do it and do it well, then don't. If you are up for a challenge, go for it. It might be more rewarding than you think.

Havoc · Jan 23, 2008

Wow, what doc tells people that D5F08= pain and suffering and having to watch your child die? I'm all about the right to choose, but I think it should be a reasonably well informed decision. I'm DF508 and R560T, 26 (and a half) and I just got my first course of Tobi, I don't do CPT, I don't do nebs. However, I am active, I have a job, I have a life. Seems everybody's got a little crap in their life if you really look for it. I say suck it up and make the most of it.

I ended up enjoying medicine (especially emergency medicine) and became a paramedic. My 1st cousin did the same and is now a nurse (and pregnant herself).

I suppose the question comes down to whether or not you think (and this would apply to anybody) you are capable of providing good care and support to a (potentially) sick child. I also think this question should be answered before anyone becomes pregnant, since, you never know your child (hopefully not but realistically) could become sick or injured, suffering far more than of a typical CFer. And so, my advice is: If you think you can't do it and do it well, then don't. If you are up for a challenge, go for it. It might be more rewarding than you think.

Dash · Jan 23, 2008

Peanut,

We have a newborn diagnosed with CF, Delta f508 is one of her mutations. She currently has no known symptoms and is the happiest, cutest baby. I could not imagine not having her as part of our family. I am sure there will be ups & downs, but now that she is here we are ready for it. I know you are scared and I would have been too if we got the news while she was in utero. My husband likes to remind me that there are so many more worse things out there than caring for a child with CF. We would not know about Cf if it were not for the newborn screen. I am sure there are scores of children with CF mutations who have not been identified and are being misdiagnosed as asthma & allergy cases that may or may not ever develop into lung disease. I agree that there is a wide spectrum of those functioning fairly normally to those who are fully experiencing symptoms, but you just never know. You have a very difficult decision to make. Please find out more by talking to a CF clinic. You may consider posting on the familes or newly diagnosed forum so you can hear from families who are caring for infants and young children with Cf. The future is bright for many! Good luck!

Dash · Jan 23, 2008

Peanut,

We have a newborn diagnosed with CF, Delta f508 is one of her mutations. She currently has no known symptoms and is the happiest, cutest baby. I could not imagine not having her as part of our family. I am sure there will be ups & downs, but now that she is here we are ready for it. I know you are scared and I would have been too if we got the news while she was in utero. My husband likes to remind me that there are so many more worse things out there than caring for a child with CF. We would not know about Cf if it were not for the newborn screen. I am sure there are scores of children with CF mutations who have not been identified and are being misdiagnosed as asthma & allergy cases that may or may not ever develop into lung disease. I agree that there is a wide spectrum of those functioning fairly normally to those who are fully experiencing symptoms, but you just never know. You have a very difficult decision to make. Please find out more by talking to a CF clinic. You may consider posting on the familes or newly diagnosed forum so you can hear from families who are caring for infants and young children with Cf. The future is bright for many! Good luck!

Dash · Jan 23, 2008

Peanut,

We have a newborn diagnosed with CF, Delta f508 is one of her mutations. She currently has no known symptoms and is the happiest, cutest baby. I could not imagine not having her as part of our family. I am sure there will be ups & downs, but now that she is here we are ready for it. I know you are scared and I would have been too if we got the news while she was in utero. My husband likes to remind me that there are so many more worse things out there than caring for a child with CF. We would not know about Cf if it were not for the newborn screen. I am sure there are scores of children with CF mutations who have not been identified and are being misdiagnosed as asthma & allergy cases that may or may not ever develop into lung disease. I agree that there is a wide spectrum of those functioning fairly normally to those who are fully experiencing symptoms, but you just never know. You have a very difficult decision to make. Please find out more by talking to a CF clinic. You may consider posting on the familes or newly diagnosed forum so you can hear from families who are caring for infants and young children with Cf. The future is bright for many! Good luck!

Dash · Jan 23, 2008

Peanut,

We have a newborn diagnosed with CF, Delta f508 is one of her mutations. She currently has no known symptoms and is the happiest, cutest baby. I could not imagine not having her as part of our family. I am sure there will be ups & downs, but now that she is here we are ready for it. I know you are scared and I would have been too if we got the news while she was in utero. My husband likes to remind me that there are so many more worse things out there than caring for a child with CF. We would not know about Cf if it were not for the newborn screen. I am sure there are scores of children with CF mutations who have not been identified and are being misdiagnosed as asthma & allergy cases that may or may not ever develop into lung disease. I agree that there is a wide spectrum of those functioning fairly normally to those who are fully experiencing symptoms, but you just never know. You have a very difficult decision to make. Please find out more by talking to a CF clinic. You may consider posting on the familes or newly diagnosed forum so you can hear from families who are caring for infants and young children with Cf. The future is bright for many! Good luck!

Dash · Jan 23, 2008

Peanut,

We have a newborn diagnosed with CF, Delta f508 is one of her mutations. She currently has no known symptoms and is the happiest, cutest baby. I could not imagine not having her as part of our family. I am sure there will be ups & downs, but now that she is here we are ready for it. I know you are scared and I would have been too if we got the news while she was in utero. My husband likes to remind me that there are so many more worse things out there than caring for a child with CF. We would not know about Cf if it were not for the newborn screen. I am sure there are scores of children with CF mutations who have not been identified and are being misdiagnosed as asthma & allergy cases that may or may not ever develop into lung disease. I agree that there is a wide spectrum of those functioning fairly normally to those who are fully experiencing symptoms, but you just never know. You have a very difficult decision to make. Please find out more by talking to a CF clinic. You may consider posting on the familes or newly diagnosed forum so you can hear from families who are caring for infants and young children with Cf. The future is bright for many! Good luck!

paysmom · Jan 23, 2008

Peanut,
If you are still readingI am with everyone else you should call a cf clinic they will be more than willing to talk to you so that you have all the current info. I also have a kid with cf he will be 7 in aug. and is doing well he only does cpt and has only had one tune up so far. I dont know what the future will hold but we are in it for the long hall. f508/unknown I hope that you ask god for the answers you are looking for and that everything goes well. Dont be scared to ask more questions.

paysmom · Jan 23, 2008

Peanut,
If you are still readingI am with everyone else you should call a cf clinic they will be more than willing to talk to you so that you have all the current info. I also have a kid with cf he will be 7 in aug. and is doing well he only does cpt and has only had one tune up so far. I dont know what the future will hold but we are in it for the long hall. f508/unknown I hope that you ask god for the answers you are looking for and that everything goes well. Dont be scared to ask more questions.

paysmom · Jan 23, 2008

Peanut,
If you are still readingI am with everyone else you should call a cf clinic they will be more than willing to talk to you so that you have all the current info. I also have a kid with cf he will be 7 in aug. and is doing well he only does cpt and has only had one tune up so far. I dont know what the future will hold but we are in it for the long hall. f508/unknown I hope that you ask god for the answers you are looking for and that everything goes well. Dont be scared to ask more questions.

paysmom · Jan 23, 2008

Peanut,
If you are still readingI am with everyone else you should call a cf clinic they will be more than willing to talk to you so that you have all the current info. I also have a kid with cf he will be 7 in aug. and is doing well he only does cpt and has only had one tune up so far. I dont know what the future will hold but we are in it for the long hall. f508/unknown I hope that you ask god for the answers you are looking for and that everything goes well. Dont be scared to ask more questions.

paysmom · Jan 23, 2008

Peanut,
If you are still readingI am with everyone else you should call a cf clinic they will be more than willing to talk to you so that you have all the current info. I also have a kid with cf he will be 7 in aug. and is doing well he only does cpt and has only had one tune up so far. I dont know what the future will hold but we are in it for the long hall. f508/unknown I hope that you ask god for the answers you are looking for and that everything goes well. Dont be scared to ask more questions.

Amnio test said my baby is positive for CF

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