22 weeks Pregnant and amnio confirmed CF

[Smilelee]

<P>I am currently 22 weeks pregnant with my second child and recently found out from the amnio results that our son has CF.  We passed the Delta F508 and N1303k genes according to the testing.  I am curious if there are any other women out there who found out during pregnancy that the child they were carrying would have CF.  From what I have heard most don't find out until after the child is born.  Neither my fiance or I have CF, we are both just carriers and had no idea until this pregnancy.  Our daughter just turned 3 and so far has been healthy and I hope either she was fortunate enough to get our "good" genes or is simply a carrier.  </P>
<P>I am trying to learn everything I can about CF so I am prepared when our son is born in January.  Any advice or help is greatly appreciated.  </P>

 

[Smilelee]

<P>I am currently 22 weeks pregnant with my second child and recently found out from the amnio results that our son has CF. We passed the Delta F508 and N1303k genes according to the testing. I am curious if there are any other women out there who found out during pregnancy that the child they were carrying would have CF. From what I have heard most don't find out until after the child is born. Neither my fiance or I have CF, we are both just carriers and had no idea until this pregnancy. Our daughter just turned 3 and so far has been healthy and I hope either she was fortunate enough to get our "good" genes or is simply a carrier. </P>
<P>I am trying to learn everything I can about CF so I am prepared when our son is born in January. Any advice or help is greatly appreciated. </P>

 

[Smilelee]

<P><BR>I am currently 22 weeks pregnant with my second child and recently found out from the amnio results that our son has CF. We passed the Delta F508 and N1303k genes according to the testing. I am curious if there are any other women out there who found out during pregnancy that the child they were carrying would have CF. From what I have heard most don't find out until after the child is born. Neither my fiance or I have CF, we are both just carriers and had no idea until this pregnancy. Our daughter just turned 3 and so far has been healthy and I hope either she was fortunate enough to get our "good" genes or is simply a carrier. </P>
<P>I am trying to learn everything I can about CF so I am prepared when our son is born in January. Any advice or help is greatly appreciated. </P>

 

[Rebjane]

Hi there, I went through the exact same thing 9 years ago. Feel free to ask any questions. My daughter with CF is my second child; found out via amnio when I was 23 weeks prego. My son was 4 at the time. My son was completely healthy but the docs suggested my son have a sweat test, which showed he did not have CF. He also had genetic testing that showed he did not have either mutation. My daughter with cf is now in 3rd grade. I went through ALOT of emotions being pregnant and knowing my child would have CF.

 

[Rebjane]

Hi there, I went through the exact same thing 9 years ago. Feel free to ask any questions. My daughter with CF is my second child; found out via amnio when I was 23 weeks prego. My son was 4 at the time. My son was completely healthy but the docs suggested my son have a sweat test, which showed he did not have CF. He also had genetic testing that showed he did not have either mutation. My daughter with cf is now in 3rd grade. I went through ALOT of emotions being pregnant and knowing my child would have CF.

 

[Rebjane]

Hi there, I went through the exact same thing 9 years ago. Feel free to ask any questions. My daughter with CF is my second child; found out via amnio when I was 23 weeks prego. My son was 4 at the time. My son was completely healthy but the docs suggested my son have a sweat test, which showed he did not have CF. He also had genetic testing that showed he did not have either mutation. My daughter with cf is now in 3rd grade. I went through ALOT of emotions being pregnant and knowing my child would have CF.
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[Smilelee]

Hi Rebjane, thank you for your response, it's comforting to read all the messages and stories on this message board. My emotions have been on a roller coaster to say the least. I am still in the early stages of learning and understanding what might lie ahead. I think that is the hardes part, not knowing what we are going to deal with until he is born. Was there anything different the doctors did for you during your pregnancy once they knew your little girl had CF? I am curious too about what things you went through immediately after she was born. Did you have specialists lined up to see her as soon as she was born?

 

[Smilelee]

Hi Rebjane, thank you for your response, it's comforting to read all the messages and stories on this message board. My emotions have been on a roller coaster to say the least. I am still in the early stages of learning and understanding what might lie ahead. I think that is the hardes part, not knowing what we are going to deal with until he is born. Was there anything different the doctors did for you during your pregnancy once they knew your little girl had CF? I am curious too about what things you went through immediately after she was born. Did you have specialists lined up to see her as soon as she was born?

 

[Smilelee]

Hi Rebjane, thank you for your response, it's comforting to read all the messages and stories on this message board. My emotions have been on a roller coaster to say the least. I am still in the early stages of learning and understanding what might lie ahead. I think that is the hardes part, not knowing what we are going to deal with until he is born. Was there anything different the doctors did for you during your pregnancy once they knew your little girl had CF? I am curious too about what things you went through immediately after she was born. Did you have specialists lined up to see her as soon as she was born?

 

[Rebjane]

I went through so many emotions; it was a grieving process. Once I found out my baby was going to have CF I was able to deal with it. The not knowing was the hardest part. I am the type of person who needs all the information out there; good and bad to process.

A couple things I did was try to eat a healthy diet. When I was going through the amnio/genetic testing I was SOOOO stressed out. I ate like crap and gained alot of weight. So, once I found out that in fact my daughter did have CF I tried to be healthier. Eating healthy, drinking lots of fluids, decreasing stress will only help yourself and baby. I also stopped working at 7 months; emotionally I just could not work. I am a nurse so it made it hard to be on my feet taking care of others when I wanted to curl into a ball and cry.

I also did meet with a CF doctor Before my daughter was born to ask every and any question I may have about CF. This was VERY helpful for me and my husband. I also had been meeting with a genetic counselor as well.

I had frequent ultrasounds to check on the baby because she had an "echogenic" bowel on her ultrasound; which is an indicator for CF and can also mean the baby will have a meconium ileus when they are born.

I had my daughter's pediatric CF doctor lined up prior to her birth. This is something you can do; figure out if you like them because they will be an essential part of your life and child's life after birth. You can find a CF center if you look on the Cystic Fibrosis Foundation's website at www.cff.org.

Also, know you are going to love that baby. My daughter with CF amazes me everyday. She is smart, funny in public school. She plays soccer, and dances. She has friends. She does LOTS of breathing treatments and VEST therapy; but she is a happy little girl.

Not all general pediatricians are up to date about CF; there is some misinformation about CF and it's important to go to an accreditated CF center. Also, realize alot of health care providers are clueless about CF.

 

[Rebjane]

I went through so many emotions; it was a grieving process. Once I found out my baby was going to have CF I was able to deal with it. The not knowing was the hardest part. I am the type of person who needs all the information out there; good and bad to process.

A couple things I did was try to eat a healthy diet. When I was going through the amnio/genetic testing I was SOOOO stressed out. I ate like crap and gained alot of weight. So, once I found out that in fact my daughter did have CF I tried to be healthier. Eating healthy, drinking lots of fluids, decreasing stress will only help yourself and baby. I also stopped working at 7 months; emotionally I just could not work. I am a nurse so it made it hard to be on my feet taking care of others when I wanted to curl into a ball and cry.

I also did meet with a CF doctor Before my daughter was born to ask every and any question I may have about CF. This was VERY helpful for me and my husband. I also had been meeting with a genetic counselor as well.

I had frequent ultrasounds to check on the baby because she had an "echogenic" bowel on her ultrasound; which is an indicator for CF and can also mean the baby will have a meconium ileus when they are born.

I had my daughter's pediatric CF doctor lined up prior to her birth. This is something you can do; figure out if you like them because they will be an essential part of your life and child's life after birth. You can find a CF center if you look on the Cystic Fibrosis Foundation's website at www.cff.org.

Also, know you are going to love that baby. My daughter with CF amazes me everyday. She is smart, funny in public school. She plays soccer, and dances. She has friends. She does LOTS of breathing treatments and VEST therapy; but she is a happy little girl.

Not all general pediatricians are up to date about CF; there is some misinformation about CF and it's important to go to an accreditated CF center. Also, realize alot of health care providers are clueless about CF.

 

[Rebjane]

I went through so many emotions; it was a grieving process. Once I found out my baby was going to have CF I was able to deal with it. The not knowing was the hardest part. I am the type of person who needs all the information out there; good and bad to process.
<br />
<br />A couple things I did was try to eat a healthy diet. When I was going through the amnio/genetic testing I was SOOOO stressed out. I ate like crap and gained alot of weight. So, once I found out that in fact my daughter did have CF I tried to be healthier. Eating healthy, drinking lots of fluids, decreasing stress will only help yourself and baby. I also stopped working at 7 months; emotionally I just could not work. I am a nurse so it made it hard to be on my feet taking care of others when I wanted to curl into a ball and cry.
<br />
<br />I also did meet with a CF doctor Before my daughter was born to ask every and any question I may have about CF. This was VERY helpful for me and my husband. I also had been meeting with a genetic counselor as well.
<br />
<br />I had frequent ultrasounds to check on the baby because she had an "echogenic" bowel on her ultrasound; which is an indicator for CF and can also mean the baby will have a meconium ileus when they are born.
<br />
<br />I had my daughter's pediatric CF doctor lined up prior to her birth. This is something you can do; figure out if you like them because they will be an essential part of your life and child's life after birth. You can find a CF center if you look on the Cystic Fibrosis Foundation's website at www.cff.org.
<br />
<br />Also, know you are going to love that baby. My daughter with CF amazes me everyday. She is smart, funny in public school. She plays soccer, and dances. She has friends. She does LOTS of breathing treatments and VEST therapy; but she is a happy little girl.
<br />
<br />Not all general pediatricians are up to date about CF; there is some misinformation about CF and it's important to go to an accreditated CF center. Also, realize alot of health care providers are clueless about CF.

 

[mummy09]

My daughter was diagnosed when she was 3 weeks old. Getting diagnosed while pregnant would have been stressful its nothing compared to having a very unhappy baby. the week and a half before she was diagnosed she would be drinking a bottle and still crying and pooping. I look back at the.pictures 2 days before we got the call and they make.me sick she was very pale and sickly looking ( though at the time we didnt really think anything about as first time parents) Educate yourself about cf but be careful especiallt about stuff on the internet. my daughter has the same mutations as you. She is now 2 and doing fabulous. Enjoy your pregnancy as much ad possible. Kristina

 

[mummy09]

My daughter was diagnosed when she was 3 weeks old. Getting diagnosed while pregnant would have been stressful its nothing compared to having a very unhappy baby. the week and a half before she was diagnosed she would be drinking a bottle and still crying and pooping. I look back at the.pictures 2 days before we got the call and they make.me sick she was very pale and sickly looking ( though at the time we didnt really think anything about as first time parents) Educate yourself about cf but be careful especiallt about stuff on the internet. my daughter has the same mutations as you. She is now 2 and doing fabulous. Enjoy your pregnancy as much ad possible. Kristina

 

[mummy09]

My daughter was diagnosed when she was 3 weeks old. Getting diagnosed while pregnant would have been stressful its nothing compared to having a very unhappy baby. the week and a half before she was diagnosed she would be drinking a bottle and still crying and pooping. I look back at the.pictures 2 days before we got the call and they make.me sick she was very pale and sickly looking ( though at the time we didnt really think anything about as first time parents) Educate yourself about cf but be careful especiallt about stuff on the internet. my daughter has the same mutations as you. She is now 2 and doing fabulous. Enjoy your pregnancy as much ad possible. Kristina

 

[Ratatosk]

We didn't know until a few days after ds was born with a bowel obstruction due to meconium illeus. We too went thru a similar grieving process. I too would encourage monitoring through out your pregnancy and make sure there's a high level NICU accessible just in case your child has an obstruction.

 

[Ratatosk]

We didn't know until a few days after ds was born with a bowel obstruction due to meconium illeus. We too went thru a similar grieving process. I too would encourage monitoring through out your pregnancy and make sure there's a high level NICU accessible just in case your child has an obstruction.

 

[Ratatosk]

We didn't know until a few days after ds was born with a bowel obstruction due to meconium illeus. We too went thru a similar grieving process. I too would encourage monitoring through out your pregnancy and make sure there's a high level NICU accessible just in case your child has an obstruction.

 

[NancyLKF]

Congrats on your soon to be born baby!  I'm sorry to hear about the diagnosis, but so glad you found this site. My daughter was diagnosed at 6 days old and sometimes I wish we had known before she was born. After she was diagnosed and put on enzymes and zantac, Maggie was just a happier baby and I feel terrible that I thought she was just super fussy when really she was suffering. <br>Life is different with CF, but it is still a lot of fun. Maggie lives a pretty normal life aside from treatments and since she was diagnosed so young, she doesn't know any different. She takes pills like a champ!<br>Definitely meet with the CF team if you haven't already and learn everything you can now. You are doing great so far and I'm sure you will take great care of this baby.  <br>

 

[NancyLKF]

Congrats on your soon to be born baby! I'm sorry to hear about the diagnosis, but so glad you found this site. My daughter was diagnosed at 6 days old and sometimes I wish we had known before she was born. After she was diagnosed and put on enzymes and zantac, Maggie was just a happier baby and I feel terrible that I thought she was just super fussy when really she was suffering. <br>Life is different with CF, but it is still a lot of fun. Maggie lives a pretty normal life aside from treatments and since she was diagnosed so young, she doesn't know any different. She takes pills like a champ!<br>Definitely meet with the CF team if you haven't already and learn everything you can now. You are doing great so far and I'm sure you will take great care of this baby. <br>