Mom's of CF'ers ...come in

[jdprecious]

My younger sister found out a few months back that she is a carrier of the DF508 gene (as am I)and she is about 6 months pregnant with her first child. The doctor/insurance company refused to test her husband for the CF genes even though there is a history of CF on our side of the family (Jaelyn).

So, now that she has gone further into her pregnancy, certain things are bothering me that don't seem to be bothering ANYONE else. The major thing is that her sodium levels are low. Well, we all know that CF is a sodium deficiency but the doctor is stating that her sodium levels were low when she went into the navy about 3 yrs ago. For me, the very first thing I would do in a pregnant mother with a history of CF in the family is to test the husband or do an amniocentesis just to rule out the possibility. Her doc keeps saying that all this is unnecessary which is driving me batty.

I msg'd my sister back and said its only necessary if you want the facts BEFORE the baby gets here instead of after. I feel like I'm raining on her parade with all the CF talk when all her doctor does is dismiss it. But what kind of sister would I be if I didn't tell her the possibilities??? I just don't know what to do.

I feel like as a new mother you have the right to know at any time during the pregnancy, not just after the baby is born. Plus, how much better prepared would I have been had I known that Jaelyn had CF while preggo instead of spending three long years and thousands of dollars on quack doctors who would never diagnose her.

So, I guess my question is: When you were pregnant with your CF'er did you have low sodium levels and what led them to dx the baby in utero?

 

[jdprecious]

My younger sister found out a few months back that she is a carrier of the DF508 gene (as am I)and she is about 6 months pregnant with her first child. The doctor/insurance company refused to test her husband for the CF genes even though there is a history of CF on our side of the family (Jaelyn).

So, now that she has gone further into her pregnancy, certain things are bothering me that don't seem to be bothering ANYONE else. The major thing is that her sodium levels are low. Well, we all know that CF is a sodium deficiency but the doctor is stating that her sodium levels were low when she went into the navy about 3 yrs ago. For me, the very first thing I would do in a pregnant mother with a history of CF in the family is to test the husband or do an amniocentesis just to rule out the possibility. Her doc keeps saying that all this is unnecessary which is driving me batty.

I msg'd my sister back and said its only necessary if you want the facts BEFORE the baby gets here instead of after. I feel like I'm raining on her parade with all the CF talk when all her doctor does is dismiss it. But what kind of sister would I be if I didn't tell her the possibilities??? I just don't know what to do.

I feel like as a new mother you have the right to know at any time during the pregnancy, not just after the baby is born. Plus, how much better prepared would I have been had I known that Jaelyn had CF while preggo instead of spending three long years and thousands of dollars on quack doctors who would never diagnose her.

So, I guess my question is: When you were pregnant with your CF'er did you have low sodium levels and what led them to dx the baby in utero?

 

[jdprecious]

My younger sister found out a few months back that she is a carrier of the DF508 gene (as am I)and she is about 6 months pregnant with her first child. The doctor/insurance company refused to test her husband for the CF genes even though there is a history of CF on our side of the family (Jaelyn).

So, now that she has gone further into her pregnancy, certain things are bothering me that don't seem to be bothering ANYONE else. The major thing is that her sodium levels are low. Well, we all know that CF is a sodium deficiency but the doctor is stating that her sodium levels were low when she went into the navy about 3 yrs ago. For me, the very first thing I would do in a pregnant mother with a history of CF in the family is to test the husband or do an amniocentesis just to rule out the possibility. Her doc keeps saying that all this is unnecessary which is driving me batty.

I msg'd my sister back and said its only necessary if you want the facts BEFORE the baby gets here instead of after. I feel like I'm raining on her parade with all the CF talk when all her doctor does is dismiss it. But what kind of sister would I be if I didn't tell her the possibilities??? I just don't know what to do.

I feel like as a new mother you have the right to know at any time during the pregnancy, not just after the baby is born. Plus, how much better prepared would I have been had I known that Jaelyn had CF while preggo instead of spending three long years and thousands of dollars on quack doctors who would never diagnose her.

So, I guess my question is: When you were pregnant with your CF'er did you have low sodium levels and what led them to dx the baby in utero?

 

[jdprecious]

My younger sister found out a few months back that she is a carrier of the DF508 gene (as am I)and she is about 6 months pregnant with her first child. The doctor/insurance company refused to test her husband for the CF genes even though there is a history of CF on our side of the family (Jaelyn).

So, now that she has gone further into her pregnancy, certain things are bothering me that don't seem to be bothering ANYONE else. The major thing is that her sodium levels are low. Well, we all know that CF is a sodium deficiency but the doctor is stating that her sodium levels were low when she went into the navy about 3 yrs ago. For me, the very first thing I would do in a pregnant mother with a history of CF in the family is to test the husband or do an amniocentesis just to rule out the possibility. Her doc keeps saying that all this is unnecessary which is driving me batty.

I msg'd my sister back and said its only necessary if you want the facts BEFORE the baby gets here instead of after. I feel like I'm raining on her parade with all the CF talk when all her doctor does is dismiss it. But what kind of sister would I be if I didn't tell her the possibilities??? I just don't know what to do.

I feel like as a new mother you have the right to know at any time during the pregnancy, not just after the baby is born. Plus, how much better prepared would I have been had I known that Jaelyn had CF while preggo instead of spending three long years and thousands of dollars on quack doctors who would never diagnose her.

So, I guess my question is: When you were pregnant with your CF'er did you have low sodium levels and what led them to dx the baby in utero?

 

[jdprecious]

My younger sister found out a few months back that she is a carrier of the DF508 gene (as am I)and she is about 6 months pregnant with her first child. The doctor/insurance company refused to test her husband for the CF genes even though there is a history of CF on our side of the family (Jaelyn).
<br />
<br />So, now that she has gone further into her pregnancy, certain things are bothering me that don't seem to be bothering ANYONE else. The major thing is that her sodium levels are low. Well, we all know that CF is a sodium deficiency but the doctor is stating that her sodium levels were low when she went into the navy about 3 yrs ago. For me, the very first thing I would do in a pregnant mother with a history of CF in the family is to test the husband or do an amniocentesis just to rule out the possibility. Her doc keeps saying that all this is unnecessary which is driving me batty.
<br />
<br />I msg'd my sister back and said its only necessary if you want the facts BEFORE the baby gets here instead of after. I feel like I'm raining on her parade with all the CF talk when all her doctor does is dismiss it. But what kind of sister would I be if I didn't tell her the possibilities??? I just don't know what to do.
<br />
<br />I feel like as a new mother you have the right to know at any time during the pregnancy, not just after the baby is born. Plus, how much better prepared would I have been had I known that Jaelyn had CF while preggo instead of spending three long years and thousands of dollars on quack doctors who would never diagnose her.
<br />
<br />So, I guess my question is: When you were pregnant with your CF'er did you have low sodium levels and what led them to dx the baby in utero?

 

[LisaGreene]

Hi Jessica,
You are such a great sis! Here is why she needs to know before birth if there is a chance the baby might have CF:
meconium ileus.

This is when the baby's meconium plugs up the intestines inutero and causes the intestines to "goof up" badly. Forgive my lack of proper medical-ease. But, this is what happened with my son and if fit weren't for the grace of God and a very smart doctor, both my son and I could have died during childbirth due to this. Which is caused by CF 95% of the time.

If a child has meconium ileus and they know ahead of time, the baby should be born via C section to prevent rupturing. I might be giving too much information here, and it might not all be medically accurate, but this is my understanding and personal experience. My son was in NICU for a month upon birth due to meconium ileus and subsequesntly diagnosed with CF. It was a very hard time.

So, if you feel comfortable, share this note with her. It might just save her and her baby's life.

And, if they choose to ignore it, you can rest easy knowing that you did everything you could to help. And, it is most likely that all will be well and the baby won't have CF but who would have thought that we would have this when our own kids were born?

Denial is a powerful thing....

I can't answer the question about sodium levels but just wanted to share my thoughts.

Hang in there- it's very frustrating!!
Hugs,
Lisa

 

[LisaGreene]

Hi Jessica,
You are such a great sis! Here is why she needs to know before birth if there is a chance the baby might have CF:
meconium ileus.

This is when the baby's meconium plugs up the intestines inutero and causes the intestines to "goof up" badly. Forgive my lack of proper medical-ease. But, this is what happened with my son and if fit weren't for the grace of God and a very smart doctor, both my son and I could have died during childbirth due to this. Which is caused by CF 95% of the time.

If a child has meconium ileus and they know ahead of time, the baby should be born via C section to prevent rupturing. I might be giving too much information here, and it might not all be medically accurate, but this is my understanding and personal experience. My son was in NICU for a month upon birth due to meconium ileus and subsequesntly diagnosed with CF. It was a very hard time.

So, if you feel comfortable, share this note with her. It might just save her and her baby's life.

And, if they choose to ignore it, you can rest easy knowing that you did everything you could to help. And, it is most likely that all will be well and the baby won't have CF but who would have thought that we would have this when our own kids were born?

Denial is a powerful thing....

I can't answer the question about sodium levels but just wanted to share my thoughts.

Hang in there- it's very frustrating!!
Hugs,
Lisa

 

[LisaGreene]

Hi Jessica,
You are such a great sis! Here is why she needs to know before birth if there is a chance the baby might have CF:
meconium ileus.

This is when the baby's meconium plugs up the intestines inutero and causes the intestines to "goof up" badly. Forgive my lack of proper medical-ease. But, this is what happened with my son and if fit weren't for the grace of God and a very smart doctor, both my son and I could have died during childbirth due to this. Which is caused by CF 95% of the time.

If a child has meconium ileus and they know ahead of time, the baby should be born via C section to prevent rupturing. I might be giving too much information here, and it might not all be medically accurate, but this is my understanding and personal experience. My son was in NICU for a month upon birth due to meconium ileus and subsequesntly diagnosed with CF. It was a very hard time.

So, if you feel comfortable, share this note with her. It might just save her and her baby's life.

And, if they choose to ignore it, you can rest easy knowing that you did everything you could to help. And, it is most likely that all will be well and the baby won't have CF but who would have thought that we would have this when our own kids were born?

Denial is a powerful thing....

I can't answer the question about sodium levels but just wanted to share my thoughts.

Hang in there- it's very frustrating!!
Hugs,
Lisa

 

[LisaGreene]

Hi Jessica,
You are such a great sis! Here is why she needs to know before birth if there is a chance the baby might have CF:
meconium ileus.

This is when the baby's meconium plugs up the intestines inutero and causes the intestines to "goof up" badly. Forgive my lack of proper medical-ease. But, this is what happened with my son and if fit weren't for the grace of God and a very smart doctor, both my son and I could have died during childbirth due to this. Which is caused by CF 95% of the time.

If a child has meconium ileus and they know ahead of time, the baby should be born via C section to prevent rupturing. I might be giving too much information here, and it might not all be medically accurate, but this is my understanding and personal experience. My son was in NICU for a month upon birth due to meconium ileus and subsequesntly diagnosed with CF. It was a very hard time.

So, if you feel comfortable, share this note with her. It might just save her and her baby's life.

And, if they choose to ignore it, you can rest easy knowing that you did everything you could to help. And, it is most likely that all will be well and the baby won't have CF but who would have thought that we would have this when our own kids were born?

Denial is a powerful thing....

I can't answer the question about sodium levels but just wanted to share my thoughts.

Hang in there- it's very frustrating!!
Hugs,
Lisa

 

[LisaGreene]

Hi Jessica,
<br />You are such a great sis! Here is why she needs to know before birth if there is a chance the baby might have CF:
<br />meconium ileus.
<br />
<br />This is when the baby's meconium plugs up the intestines inutero and causes the intestines to "goof up" badly. Forgive my lack of proper medical-ease. But, this is what happened with my son and if fit weren't for the grace of God and a very smart doctor, both my son and I could have died during childbirth due to this. Which is caused by CF 95% of the time.
<br />
<br />If a child has meconium ileus and they know ahead of time, the baby should be born via C section to prevent rupturing. I might be giving too much information here, and it might not all be medically accurate, but this is my understanding and personal experience. My son was in NICU for a month upon birth due to meconium ileus and subsequesntly diagnosed with CF. It was a very hard time.
<br />
<br />So, if you feel comfortable, share this note with her. It might just save her and her baby's life.
<br />
<br />And, if they choose to ignore it, you can rest easy knowing that you did everything you could to help. And, it is most likely that all will be well and the baby won't have CF but who would have thought that we would have this when our own kids were born?
<br />
<br />Denial is a powerful thing....
<br />
<br />I can't answer the question about sodium levels but just wanted to share my thoughts.
<br />
<br />Hang in there- it's very frustrating!!
<br />Hugs,
<br />Lisa
<br />
<br />
<br />
<br />

 

[amityvsvenom]

My daughter had MI. She went into surgery 11 hours after she was born, and then 4 more surgeries after that. She should really make sure her husband gets tested for the gene. Its nothing to take lightly.

 

[amityvsvenom]

My daughter had MI. She went into surgery 11 hours after she was born, and then 4 more surgeries after that. She should really make sure her husband gets tested for the gene. Its nothing to take lightly.

 

[amityvsvenom]

My daughter had MI. She went into surgery 11 hours after she was born, and then 4 more surgeries after that. She should really make sure her husband gets tested for the gene. Its nothing to take lightly.

 

[amityvsvenom]

My daughter had MI. She went into surgery 11 hours after she was born, and then 4 more surgeries after that. She should really make sure her husband gets tested for the gene. Its nothing to take lightly.

 

[amityvsvenom]

My daughter had MI. She went into surgery 11 hours after she was born, and then 4 more surgeries after that. She should really make sure her husband gets tested for the gene. Its nothing to take lightly.

 

[Mommafirst]

Hmmmm I don't get it! How could a licensed doctor worth anything think that a pregnant mother who is known to be a df508 carrier isn't encouraging testing of the father??? This type of genetic testing is pretty darned routine nowadays, and is protocol if the mom knows they are a carrier and want to know.

The only think I can think of is that the doctor is pushing his agenda on his patient, fearful that the knowledge might be the cause for your sister to consider termination. Seems like a pretty ignorant and controlling behavior and is harmful to your sister.

I'd be furious. But we can not control, what we cannot control.

I honestly don't know if maternal sodium levels have anything to do with carrying a CF baby. My daughter was born with a meconium plug (slightly different from the MI), and my biggest symptom was excess (extreme excess) amniotic fluid. They noticed it when I had an amnio to show viability. My doctor said that my c-sec produce the largest "wave" of fluid that she's ever seen. We didn't realize that this was related to CF or the plug at the time, since she wasn't diagnosed for a few months.

Anyway, I'd strongly encourage your sister to get a different doctor or request a genetic consult at the very least. I wish I had better advice.

 

[Mommafirst]

Hmmmm I don't get it! How could a licensed doctor worth anything think that a pregnant mother who is known to be a df508 carrier isn't encouraging testing of the father??? This type of genetic testing is pretty darned routine nowadays, and is protocol if the mom knows they are a carrier and want to know.

The only think I can think of is that the doctor is pushing his agenda on his patient, fearful that the knowledge might be the cause for your sister to consider termination. Seems like a pretty ignorant and controlling behavior and is harmful to your sister.

I'd be furious. But we can not control, what we cannot control.

I honestly don't know if maternal sodium levels have anything to do with carrying a CF baby. My daughter was born with a meconium plug (slightly different from the MI), and my biggest symptom was excess (extreme excess) amniotic fluid. They noticed it when I had an amnio to show viability. My doctor said that my c-sec produce the largest "wave" of fluid that she's ever seen. We didn't realize that this was related to CF or the plug at the time, since she wasn't diagnosed for a few months.

Anyway, I'd strongly encourage your sister to get a different doctor or request a genetic consult at the very least. I wish I had better advice.

 

[Mommafirst]

Hmmmm I don't get it! How could a licensed doctor worth anything think that a pregnant mother who is known to be a df508 carrier isn't encouraging testing of the father??? This type of genetic testing is pretty darned routine nowadays, and is protocol if the mom knows they are a carrier and want to know.

The only think I can think of is that the doctor is pushing his agenda on his patient, fearful that the knowledge might be the cause for your sister to consider termination. Seems like a pretty ignorant and controlling behavior and is harmful to your sister.

I'd be furious. But we can not control, what we cannot control.

I honestly don't know if maternal sodium levels have anything to do with carrying a CF baby. My daughter was born with a meconium plug (slightly different from the MI), and my biggest symptom was excess (extreme excess) amniotic fluid. They noticed it when I had an amnio to show viability. My doctor said that my c-sec produce the largest "wave" of fluid that she's ever seen. We didn't realize that this was related to CF or the plug at the time, since she wasn't diagnosed for a few months.

Anyway, I'd strongly encourage your sister to get a different doctor or request a genetic consult at the very least. I wish I had better advice.

 

[Mommafirst]

Hmmmm I don't get it! How could a licensed doctor worth anything think that a pregnant mother who is known to be a df508 carrier isn't encouraging testing of the father??? This type of genetic testing is pretty darned routine nowadays, and is protocol if the mom knows they are a carrier and want to know.

The only think I can think of is that the doctor is pushing his agenda on his patient, fearful that the knowledge might be the cause for your sister to consider termination. Seems like a pretty ignorant and controlling behavior and is harmful to your sister.

I'd be furious. But we can not control, what we cannot control.

I honestly don't know if maternal sodium levels have anything to do with carrying a CF baby. My daughter was born with a meconium plug (slightly different from the MI), and my biggest symptom was excess (extreme excess) amniotic fluid. They noticed it when I had an amnio to show viability. My doctor said that my c-sec produce the largest "wave" of fluid that she's ever seen. We didn't realize that this was related to CF or the plug at the time, since she wasn't diagnosed for a few months.

Anyway, I'd strongly encourage your sister to get a different doctor or request a genetic consult at the very least. I wish I had better advice.

 

[Mommafirst]

Hmmmm I don't get it! How could a licensed doctor worth anything think that a pregnant mother who is known to be a df508 carrier isn't encouraging testing of the father??? This type of genetic testing is pretty darned routine nowadays, and is protocol if the mom knows they are a carrier and want to know.
<br />
<br />The only think I can think of is that the doctor is pushing his agenda on his patient, fearful that the knowledge might be the cause for your sister to consider termination. Seems like a pretty ignorant and controlling behavior and is harmful to your sister.
<br />
<br />I'd be furious. But we can not control, what we cannot control.
<br />
<br />I honestly don't know if maternal sodium levels have anything to do with carrying a CF baby. My daughter was born with a meconium plug (slightly different from the MI), and my biggest symptom was excess (extreme excess) amniotic fluid. They noticed it when I had an amnio to show viability. My doctor said that my c-sec produce the largest "wave" of fluid that she's ever seen. We didn't realize that this was related to CF or the plug at the time, since she wasn't diagnosed for a few months.
<br />
<br />Anyway, I'd strongly encourage your sister to get a different doctor or request a genetic consult at the very least. I wish I had better advice.