Pre-natal Screening

grassisgreener · Jul 21, 2008

Pg 1: declined all prenatal testing, knew we were keeping the baby no matter what and didn't have any family history.

Baby 1: diagnosed with CF at 12 months old, wouldn't have been caught on prenatal testing/amnio or newborn screen due to unknown mutation.

Pg 2: had CFers unknown mutation identified so that we could have amnio diagnosis. Insurance initially said they wouldn't pay for this but once we convinced them that we were doing this to diagnose not to abort, they covered it (over $3,000).

I personally think many OB's are clueless about CF!

grassisgreener · Jul 21, 2008

Pg 1: declined all prenatal testing, knew we were keeping the baby no matter what and didn't have any family history.

Baby 1: diagnosed with CF at 12 months old, wouldn't have been caught on prenatal testing/amnio or newborn screen due to unknown mutation.

Pg 2: had CFers unknown mutation identified so that we could have amnio diagnosis. Insurance initially said they wouldn't pay for this but once we convinced them that we were doing this to diagnose not to abort, they covered it (over $3,000).

I personally think many OB's are clueless about CF!

grassisgreener · Jul 21, 2008

Pg 1: declined all prenatal testing, knew we were keeping the baby no matter what and didn't have any family history.

Baby 1: diagnosed with CF at 12 months old, wouldn't have been caught on prenatal testing/amnio or newborn screen due to unknown mutation.

Pg 2: had CFers unknown mutation identified so that we could have amnio diagnosis. Insurance initially said they wouldn't pay for this but once we convinced them that we were doing this to diagnose not to abort, they covered it (over $3,000).

I personally think many OB's are clueless about CF!

grassisgreener · Jul 21, 2008

Pg 1: declined all prenatal testing, knew we were keeping the baby no matter what and didn't have any family history.

Baby 1: diagnosed with CF at 12 months old, wouldn't have been caught on prenatal testing/amnio or newborn screen due to unknown mutation.

Pg 2: had CFers unknown mutation identified so that we could have amnio diagnosis. Insurance initially said they wouldn't pay for this but once we convinced them that we were doing this to diagnose not to abort, they covered it (over $3,000).

I personally think many OB's are clueless about CF!

grassisgreener · Jul 21, 2008

Pg 1: declined all prenatal testing, knew we were keeping the baby no matter what and didn't have any family history.
 
 Baby 1: diagnosed with CF at 12 months old, wouldn't have been caught on prenatal testing/amnio or newborn screen due to unknown mutation.
 
 Pg 2: had CFers unknown mutation identified so that we could have amnio diagnosis. Insurance initially said they wouldn't pay for this but once we convinced them that we were doing this to diagnose not to abort, they covered it (over $3,000).
 
 I personally think many OB's are clueless about CF!

Tiffado · Jul 21, 2008

Ok....Im glad to see I was not alone.

My DH and I knew what the chances were of our baby having CF when we both came back as carriers. It was not a surprise....just a disapointment.

Fortunatley with our combo of genes, my Madison is not expected to have many if any ill effects from her CF. As many people on here hate to hear....she has atypical CF. We are thankful!

Anyway, I am very very concerned about the lack of information there is out there. Even with the recomendations from the ACOG (thank you Linda!) the doctors are not following through all the time. I literally asked for the testing before I was pregnant and was told there was nothing that needed to be done. UGH how aggravating! We most likely would not have done anything different as far as IVF BUT being able to have that choice BEFORE being pregnant with a baby with CF should be available.

I want to raise awareness..and Im not sure where to begin. I am going to write a letter to my specific OBGYN to start.

Tiffado · Jul 21, 2008

Ok....Im glad to see I was not alone.

My DH and I knew what the chances were of our baby having CF when we both came back as carriers. It was not a surprise....just a disapointment.

Fortunatley with our combo of genes, my Madison is not expected to have many if any ill effects from her CF. As many people on here hate to hear....she has atypical CF. We are thankful!

Anyway, I am very very concerned about the lack of information there is out there. Even with the recomendations from the ACOG (thank you Linda!) the doctors are not following through all the time. I literally asked for the testing before I was pregnant and was told there was nothing that needed to be done. UGH how aggravating! We most likely would not have done anything different as far as IVF BUT being able to have that choice BEFORE being pregnant with a baby with CF should be available.

I want to raise awareness..and Im not sure where to begin. I am going to write a letter to my specific OBGYN to start.

Tiffado · Jul 21, 2008

Ok....Im glad to see I was not alone.

My DH and I knew what the chances were of our baby having CF when we both came back as carriers. It was not a surprise....just a disapointment.

Fortunatley with our combo of genes, my Madison is not expected to have many if any ill effects from her CF. As many people on here hate to hear....she has atypical CF. We are thankful!

Anyway, I am very very concerned about the lack of information there is out there. Even with the recomendations from the ACOG (thank you Linda!) the doctors are not following through all the time. I literally asked for the testing before I was pregnant and was told there was nothing that needed to be done. UGH how aggravating! We most likely would not have done anything different as far as IVF BUT being able to have that choice BEFORE being pregnant with a baby with CF should be available.

I want to raise awareness..and Im not sure where to begin. I am going to write a letter to my specific OBGYN to start.

Tiffado · Jul 21, 2008

Ok....Im glad to see I was not alone.

My DH and I knew what the chances were of our baby having CF when we both came back as carriers. It was not a surprise....just a disapointment.

Fortunatley with our combo of genes, my Madison is not expected to have many if any ill effects from her CF. As many people on here hate to hear....she has atypical CF. We are thankful!

Anyway, I am very very concerned about the lack of information there is out there. Even with the recomendations from the ACOG (thank you Linda!) the doctors are not following through all the time. I literally asked for the testing before I was pregnant and was told there was nothing that needed to be done. UGH how aggravating! We most likely would not have done anything different as far as IVF BUT being able to have that choice BEFORE being pregnant with a baby with CF should be available.

I want to raise awareness..and Im not sure where to begin. I am going to write a letter to my specific OBGYN to start.

Tiffado · Jul 21, 2008

Ok....Im glad to see I was not alone.
 
 My DH and I knew what the chances were of our baby having CF when we both came back as carriers. It was not a surprise....just a disapointment.
 
 Fortunatley with our combo of genes, my Madison is not expected to have many if any ill effects from her CF. As many people on here hate to hear....she has atypical CF. We are thankful!
 
 Anyway, I am very very concerned about the lack of information there is out there. Even with the recomendations from the ACOG (thank you Linda!) the doctors are not following through all the time. I literally asked for the testing before I was pregnant and was told there was nothing that needed to be done. UGH how aggravating! We most likely would not have done anything different as far as IVF BUT being able to have that choice BEFORE being pregnant with a baby with CF should be available.
 
 I want to raise awareness..and Im not sure where to begin. I am going to write a letter to my specific OBGYN to start.

grassisgreener · Jul 21, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Tiffado

Fortunatley with our combo of genes, my Madison is not expected to have many if any ill effects from her CF. As many people on here hate to hear....she has atypical CF. We are thankful!
</end quote></div>

Why do you say that people on here hate to hear that?

grassisgreener · Jul 21, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Tiffado

Fortunatley with our combo of genes, my Madison is not expected to have many if any ill effects from her CF. As many people on here hate to hear....she has atypical CF. We are thankful!
</end quote></div>

Why do you say that people on here hate to hear that?

grassisgreener · Jul 21, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Tiffado

Fortunatley with our combo of genes, my Madison is not expected to have many if any ill effects from her CF. As many people on here hate to hear....she has atypical CF. We are thankful!
</end quote></div>

Why do you say that people on here hate to hear that?

grassisgreener · Jul 21, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Tiffado

Fortunatley with our combo of genes, my Madison is not expected to have many if any ill effects from her CF. As many people on here hate to hear....she has atypical CF. We are thankful!
</end quote>

Why do you say that people on here hate to hear that?

grassisgreener · Jul 21, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Tiffado
 
 Fortunatley with our combo of genes, my Madison is not expected to have many if any ill effects from her CF. As many people on here hate to hear....she has atypical CF. We are thankful!
 </end quote>
 
 Why do you say that people on here hate to hear that?

Tiffado · Jul 21, 2008