Prenatal diagnosis

W

welshwitch

Guest
Hi there!

as a 28 year young woman w. CF, I just wanted to post from the perspective of someone with a very "lucky" hand as i have never been hospitalized for CF...I'm gonna be 29 next month! life for me has been very normal aside from the occasional "freakouts" about this disease...but it's been very doable and I think your son will be okay!
 
W

welshwitch

Guest
Hi there!

as a 28 year young woman w. CF, I just wanted to post from the perspective of someone with a very "lucky" hand as i have never been hospitalized for CF...I'm gonna be 29 next month! life for me has been very normal aside from the occasional "freakouts" about this disease...but it's been very doable and I think your son will be okay!
 
W

welshwitch

Guest
Hi there!

as a 28 year young woman w. CF, I just wanted to post from the perspective of someone with a very "lucky" hand as i have never been hospitalized for CF...I'm gonna be 29 next month! life for me has been very normal aside from the occasional "freakouts" about this disease...but it's been very doable and I think your son will be okay!
 
W

welshwitch

Guest
Hi there!

as a 28 year young woman w. CF, I just wanted to post from the perspective of someone with a very "lucky" hand as i have never been hospitalized for CF...I'm gonna be 29 next month! life for me has been very normal aside from the occasional "freakouts" about this disease...but it's been very doable and I think your son will be okay!
 
W

welshwitch

Guest
Hi there!
<br />
<br />as a 28 year young woman w. CF, I just wanted to post from the perspective of someone with a very "lucky" hand as i have never been hospitalized for CF...I'm gonna be 29 next month! life for me has been very normal aside from the occasional "freakouts" about this disease...but it's been very doable and I think your son will be okay!
 

osterholz88

New member
Hi Shell, I found this site after finding out that I am a carrier for CF. I did not know that I was a carrier and had no clue that I was even being tested for my carrier status. I was 10 weeks pregnant when I found out that I'm a carrier. I spent two days crying on the couch because my knowledge of CF was so limited and I was scared to death about what it would mean for our baby if she did have CF. Then I found this site. By the time we got my husband's test results back, I already knew that although I did not want my child to have CF, I could handle it if she did. As it turns out, my husband is not a carrier for the 23 most common mutations. I know, however, that his test only touches the surface and the possibility exists that he has a mutation that he was not tested for. We are optimistic that our daughter (due in December) will not have CF, but if she does we'll deal with it. I continue to visit this site regularly. My daughter has a 50% chance of being a carrier, so even if we escape CF, it still could show up in future generations. This site is the best I've found in terms of understanding the disease and how it affects the lives of people dealing with it. I have had no further testing related my daughter's CF status beyond the testing run for the 23 most common mutations on me and my husband. Our 19 week ultrasound looked good, and as I said, we're hoping for the best. Had my husband been a carrier of any of the mutations he was tested for, we would have done further testing, not because we would terminate, but because we would want to begin looking into CF centers and how to get our daughter started on the best preventitive care available. I would encourage you to begin loooking into where your son will receive care for his CF and begin learning about the treatment options. When I was most afraid of CF, I spent a lot of time researching Children's Mercy in Kansas City as that would have been where our daughter would have most likely received care for CF. It really helped me as I struggled to cope with the unknown. I'm so glad you found this site!
 

osterholz88

New member
Hi Shell, I found this site after finding out that I am a carrier for CF. I did not know that I was a carrier and had no clue that I was even being tested for my carrier status. I was 10 weeks pregnant when I found out that I'm a carrier. I spent two days crying on the couch because my knowledge of CF was so limited and I was scared to death about what it would mean for our baby if she did have CF. Then I found this site. By the time we got my husband's test results back, I already knew that although I did not want my child to have CF, I could handle it if she did. As it turns out, my husband is not a carrier for the 23 most common mutations. I know, however, that his test only touches the surface and the possibility exists that he has a mutation that he was not tested for. We are optimistic that our daughter (due in December) will not have CF, but if she does we'll deal with it. I continue to visit this site regularly. My daughter has a 50% chance of being a carrier, so even if we escape CF, it still could show up in future generations. This site is the best I've found in terms of understanding the disease and how it affects the lives of people dealing with it. I have had no further testing related my daughter's CF status beyond the testing run for the 23 most common mutations on me and my husband. Our 19 week ultrasound looked good, and as I said, we're hoping for the best. Had my husband been a carrier of any of the mutations he was tested for, we would have done further testing, not because we would terminate, but because we would want to begin looking into CF centers and how to get our daughter started on the best preventitive care available. I would encourage you to begin loooking into where your son will receive care for his CF and begin learning about the treatment options. When I was most afraid of CF, I spent a lot of time researching Children's Mercy in Kansas City as that would have been where our daughter would have most likely received care for CF. It really helped me as I struggled to cope with the unknown. I'm so glad you found this site!
 

osterholz88

New member
Hi Shell, I found this site after finding out that I am a carrier for CF. I did not know that I was a carrier and had no clue that I was even being tested for my carrier status. I was 10 weeks pregnant when I found out that I'm a carrier. I spent two days crying on the couch because my knowledge of CF was so limited and I was scared to death about what it would mean for our baby if she did have CF. Then I found this site. By the time we got my husband's test results back, I already knew that although I did not want my child to have CF, I could handle it if she did. As it turns out, my husband is not a carrier for the 23 most common mutations. I know, however, that his test only touches the surface and the possibility exists that he has a mutation that he was not tested for. We are optimistic that our daughter (due in December) will not have CF, but if she does we'll deal with it. I continue to visit this site regularly. My daughter has a 50% chance of being a carrier, so even if we escape CF, it still could show up in future generations. This site is the best I've found in terms of understanding the disease and how it affects the lives of people dealing with it. I have had no further testing related my daughter's CF status beyond the testing run for the 23 most common mutations on me and my husband. Our 19 week ultrasound looked good, and as I said, we're hoping for the best. Had my husband been a carrier of any of the mutations he was tested for, we would have done further testing, not because we would terminate, but because we would want to begin looking into CF centers and how to get our daughter started on the best preventitive care available. I would encourage you to begin loooking into where your son will receive care for his CF and begin learning about the treatment options. When I was most afraid of CF, I spent a lot of time researching Children's Mercy in Kansas City as that would have been where our daughter would have most likely received care for CF. It really helped me as I struggled to cope with the unknown. I'm so glad you found this site!
 

osterholz88

New member
Hi Shell, I found this site after finding out that I am a carrier for CF. I did not know that I was a carrier and had no clue that I was even being tested for my carrier status. I was 10 weeks pregnant when I found out that I'm a carrier. I spent two days crying on the couch because my knowledge of CF was so limited and I was scared to death about what it would mean for our baby if she did have CF. Then I found this site. By the time we got my husband's test results back, I already knew that although I did not want my child to have CF, I could handle it if she did. As it turns out, my husband is not a carrier for the 23 most common mutations. I know, however, that his test only touches the surface and the possibility exists that he has a mutation that he was not tested for. We are optimistic that our daughter (due in December) will not have CF, but if she does we'll deal with it. I continue to visit this site regularly. My daughter has a 50% chance of being a carrier, so even if we escape CF, it still could show up in future generations. This site is the best I've found in terms of understanding the disease and how it affects the lives of people dealing with it. I have had no further testing related my daughter's CF status beyond the testing run for the 23 most common mutations on me and my husband. Our 19 week ultrasound looked good, and as I said, we're hoping for the best. Had my husband been a carrier of any of the mutations he was tested for, we would have done further testing, not because we would terminate, but because we would want to begin looking into CF centers and how to get our daughter started on the best preventitive care available. I would encourage you to begin loooking into where your son will receive care for his CF and begin learning about the treatment options. When I was most afraid of CF, I spent a lot of time researching Children's Mercy in Kansas City as that would have been where our daughter would have most likely received care for CF. It really helped me as I struggled to cope with the unknown. I'm so glad you found this site!
 

osterholz88

New member
Hi Shell, I found this site after finding out that I am a carrier for CF. I did not know that I was a carrier and had no clue that I was even being tested for my carrier status. I was 10 weeks pregnant when I found out that I'm a carrier. I spent two days crying on the couch because my knowledge of CF was so limited and I was scared to death about what it would mean for our baby if she did have CF. Then I found this site. By the time we got my husband's test results back, I already knew that although I did not want my child to have CF, I could handle it if she did. As it turns out, my husband is not a carrier for the 23 most common mutations. I know, however, that his test only touches the surface and the possibility exists that he has a mutation that he was not tested for. We are optimistic that our daughter (due in December) will not have CF, but if she does we'll deal with it. I continue to visit this site regularly. My daughter has a 50% chance of being a carrier, so even if we escape CF, it still could show up in future generations. This site is the best I've found in terms of understanding the disease and how it affects the lives of people dealing with it. I have had no further testing related my daughter's CF status beyond the testing run for the 23 most common mutations on me and my husband. Our 19 week ultrasound looked good, and as I said, we're hoping for the best. Had my husband been a carrier of any of the mutations he was tested for, we would have done further testing, not because we would terminate, but because we would want to begin looking into CF centers and how to get our daughter started on the best preventitive care available. I would encourage you to begin loooking into where your son will receive care for his CF and begin learning about the treatment options. When I was most afraid of CF, I spent a lot of time researching Children's Mercy in Kansas City as that would have been where our daughter would have most likely received care for CF. It really helped me as I struggled to cope with the unknown. I'm so glad you found this site!
 

grassisgreener

New member
I think you are making the right choice. When you meet your little boy you will know it too. My daughter (age 5) was diagnosed at 12 months old and we were shocked & devastated to say the least. That was 4 years ago and we have since gotten back on our feet and have been enjoying the good things in life.

For some reason your comment of "My main concern is how on earth we are going to cope with a very active and spritely toddler and a baby that has special needs." struck me funny (in an odd way, my sense of humor I suppose) because my CFer is now 5 and she is and always has been VERY active and spritely herself! She is a joy and brings so much life, energy and fun to our lives.

I am sorry about the diagnosis but I hope the rest of your pregnancy goes well and you are able to enjoy your beautiful boy!
 

grassisgreener

New member
I think you are making the right choice. When you meet your little boy you will know it too. My daughter (age 5) was diagnosed at 12 months old and we were shocked & devastated to say the least. That was 4 years ago and we have since gotten back on our feet and have been enjoying the good things in life.

For some reason your comment of "My main concern is how on earth we are going to cope with a very active and spritely toddler and a baby that has special needs." struck me funny (in an odd way, my sense of humor I suppose) because my CFer is now 5 and she is and always has been VERY active and spritely herself! She is a joy and brings so much life, energy and fun to our lives.

I am sorry about the diagnosis but I hope the rest of your pregnancy goes well and you are able to enjoy your beautiful boy!
 

grassisgreener

New member
I think you are making the right choice. When you meet your little boy you will know it too. My daughter (age 5) was diagnosed at 12 months old and we were shocked & devastated to say the least. That was 4 years ago and we have since gotten back on our feet and have been enjoying the good things in life.

For some reason your comment of "My main concern is how on earth we are going to cope with a very active and spritely toddler and a baby that has special needs." struck me funny (in an odd way, my sense of humor I suppose) because my CFer is now 5 and she is and always has been VERY active and spritely herself! She is a joy and brings so much life, energy and fun to our lives.

I am sorry about the diagnosis but I hope the rest of your pregnancy goes well and you are able to enjoy your beautiful boy!
 

grassisgreener

New member
I think you are making the right choice. When you meet your little boy you will know it too. My daughter (age 5) was diagnosed at 12 months old and we were shocked & devastated to say the least. That was 4 years ago and we have since gotten back on our feet and have been enjoying the good things in life.

For some reason your comment of "My main concern is how on earth we are going to cope with a very active and spritely toddler and a baby that has special needs." struck me funny (in an odd way, my sense of humor I suppose) because my CFer is now 5 and she is and always has been VERY active and spritely herself! She is a joy and brings so much life, energy and fun to our lives.

I am sorry about the diagnosis but I hope the rest of your pregnancy goes well and you are able to enjoy your beautiful boy!
 

grassisgreener

New member
I think you are making the right choice. When you meet your little boy you will know it too. My daughter (age 5) was diagnosed at 12 months old and we were shocked & devastated to say the least. That was 4 years ago and we have since gotten back on our feet and have been enjoying the good things in life.
<br />
<br />For some reason your comment of "My main concern is how on earth we are going to cope with a very active and spritely toddler and a baby that has special needs." struck me funny (in an odd way, my sense of humor I suppose) because my CFer is now 5 and she is and always has been VERY active and spritely herself! She is a joy and brings so much life, energy and fun to our lives.
<br />
<br />I am sorry about the diagnosis but I hope the rest of your pregnancy goes well and you are able to enjoy your beautiful boy!
 

ests2000

New member
i'm so glad you decided to have your sweet baby boy i was only 18 when i had my son and had never hear of this thing they call c.f but wouldnt have done any thing diferent if i did know what c.f. was he will be 21 on the 12 just a few short days away and he is still going srong he has tought me strgenth and much more good luck with all you do my thought and prayer with you and every one that has gone though this or that is just beginning
 

ests2000

New member
i'm so glad you decided to have your sweet baby boy i was only 18 when i had my son and had never hear of this thing they call c.f but wouldnt have done any thing diferent if i did know what c.f. was he will be 21 on the 12 just a few short days away and he is still going srong he has tought me strgenth and much more good luck with all you do my thought and prayer with you and every one that has gone though this or that is just beginning
 

ests2000

New member
i'm so glad you decided to have your sweet baby boy i was only 18 when i had my son and had never hear of this thing they call c.f but wouldnt have done any thing diferent if i did know what c.f. was he will be 21 on the 12 just a few short days away and he is still going srong he has tought me strgenth and much more good luck with all you do my thought and prayer with you and every one that has gone though this or that is just beginning
 

ests2000

New member
i'm so glad you decided to have your sweet baby boy i was only 18 when i had my son and had never hear of this thing they call c.f but wouldnt have done any thing diferent if i did know what c.f. was he will be 21 on the 12 just a few short days away and he is still going srong he has tought me strgenth and much more good luck with all you do my thought and prayer with you and every one that has gone though this or that is just beginning
 

ests2000

New member
i'm so glad you decided to have your sweet baby boy i was only 18 when i had my son and had never hear of this thing they call c.f but wouldnt have done any thing diferent if i did know what c.f. was he will be 21 on the 12 just a few short days away and he is still going srong he has tought me strgenth and much more good luck with all you do my thought and prayer with you and every one that has gone though this or that is just beginning
 
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