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Question for parents who knew baby had CF prior to birth
- Thread starter anonymous
- Start date
Jen,
I just saw your question as I haven't been online in a while. Sorry for the delayed response but thought I'd go ahead and answer anyway.
I found out via amnio that my second daughter had CF when I was about 17 weeks pregnant. (I already had one daughter with CF so that's why we did the amnio). I was immediately switched from my OB-GYN to a perinatologist for the rest of the pregnancy. I was now unable to deliver at the hospital we had planned to deliver at because there was no children's hospital nearby. Therefore my new perinatologist was 100 miles away so that I could deliver at a hospital which connected with a children's hospital. At about 33-34 weeks they started seeing problems on ultrasounds which they thought were signs of a bowel blockage. They told me that the baby would definately need surgery at birth. They induced me a week early partly because of that and partly because they didn't want to risk me going into labor with a 100 mile drive ahead of me. There were no less than 11 people in my delivery room including a pediatrician from children's hosptial who was ready to take the baby straight to children's. As it happened Kacie turned out not to have a bowel blockage. They kept her from me for a couple of hours but then they suprised me by bringing her into my room and telling me I could keep her with me. She had already pooped and they saw no problems. She ended up staying in the room with me and going straight home with me. I was amazed and very grateful. The care I received was excellent and I am very glad they took all the precautions they did. I didn't exactly enjoy having to drive 100 miles each way every time I saw the dr and then having 11 people in the delivery room with me...but it was all worth it. Much better safe than sorry. Hope this answers a couple of your questions as to what could be done to prevent problems. Best of luck to you.
I just saw your question as I haven't been online in a while. Sorry for the delayed response but thought I'd go ahead and answer anyway.
I found out via amnio that my second daughter had CF when I was about 17 weeks pregnant. (I already had one daughter with CF so that's why we did the amnio). I was immediately switched from my OB-GYN to a perinatologist for the rest of the pregnancy. I was now unable to deliver at the hospital we had planned to deliver at because there was no children's hospital nearby. Therefore my new perinatologist was 100 miles away so that I could deliver at a hospital which connected with a children's hospital. At about 33-34 weeks they started seeing problems on ultrasounds which they thought were signs of a bowel blockage. They told me that the baby would definately need surgery at birth. They induced me a week early partly because of that and partly because they didn't want to risk me going into labor with a 100 mile drive ahead of me. There were no less than 11 people in my delivery room including a pediatrician from children's hosptial who was ready to take the baby straight to children's. As it happened Kacie turned out not to have a bowel blockage. They kept her from me for a couple of hours but then they suprised me by bringing her into my room and telling me I could keep her with me. She had already pooped and they saw no problems. She ended up staying in the room with me and going straight home with me. I was amazed and very grateful. The care I received was excellent and I am very glad they took all the precautions they did. I didn't exactly enjoy having to drive 100 miles each way every time I saw the dr and then having 11 people in the delivery room with me...but it was all worth it. Much better safe than sorry. Hope this answers a couple of your questions as to what could be done to prevent problems. Best of luck to you.
Hi Jen,
Andrew is precious!! I followed your story and i am not sure if you remember me but i replied a couple of times to your posts on this site while you were pregnant. I am so sorry for your outcome and the way your doctors dismissed your concerns.
We found out with our second child that we were carriers at 16 weeks and decided to do an anmio. Our baby of course had cf and my OB was very on top of our situation. He set us up with a pediatric surgeon AND a perintologist AND the head doctor of the NICU at the hospital she was to be delivered in case the worst was to happen with bowel obstruction. I recieved ultrasounds almost every other week and then it was once a week towards the end of my pregnancy. At about 26 weeks i started showing echnoginic bowel on ultrasound and at 36 weeks i was measuring 42 weeks. So i was sent to the perintologists RIGHT AWAY because the bowel was brighter than normal and dialated. The perintologist was very alarmed and said if i didn't deliver TODAY that her bowel would rupture and cause major problems. My doctor appt was at 1:30 pm and Brinly was born at 3:30pm with an emergency c- section. She ended up having bowel surgery with the pediatric surgeon that we had lined up "just in case" right away because the blockage was so high in her upper intestine. She was in the level 3 NICU for 3 weeks. She had a stoma bag (ileostomy)for 5 months. But everything else was fine.
I thank God everyday that my doctors were in such great tune and support with one another. I really feel like my doctors didn't know what to expect either and they were just being overly precaucious. I was the first "case" of a couple being tested positive cf carriers and for a baby having cf in their office so i kinda felt like everyone felt sorry for us and i was babied a little more through out my pregnancy. As you know- it is a scary thing and you really don't know what is right or wrong or what to expect when you are going through such an emotional rollercoaster. So you rely on the so called experts! Again, i am so sorry you had to go through such an experience when it could have been prevented through thorough OB and specialists care.
Much love,
Blythe
mom to Brinly 21mo w/cf, Birgess 4 w/o and baby due 8/8 w/o
Andrew is precious!! I followed your story and i am not sure if you remember me but i replied a couple of times to your posts on this site while you were pregnant. I am so sorry for your outcome and the way your doctors dismissed your concerns.
We found out with our second child that we were carriers at 16 weeks and decided to do an anmio. Our baby of course had cf and my OB was very on top of our situation. He set us up with a pediatric surgeon AND a perintologist AND the head doctor of the NICU at the hospital she was to be delivered in case the worst was to happen with bowel obstruction. I recieved ultrasounds almost every other week and then it was once a week towards the end of my pregnancy. At about 26 weeks i started showing echnoginic bowel on ultrasound and at 36 weeks i was measuring 42 weeks. So i was sent to the perintologists RIGHT AWAY because the bowel was brighter than normal and dialated. The perintologist was very alarmed and said if i didn't deliver TODAY that her bowel would rupture and cause major problems. My doctor appt was at 1:30 pm and Brinly was born at 3:30pm with an emergency c- section. She ended up having bowel surgery with the pediatric surgeon that we had lined up "just in case" right away because the blockage was so high in her upper intestine. She was in the level 3 NICU for 3 weeks. She had a stoma bag (ileostomy)for 5 months. But everything else was fine.
I thank God everyday that my doctors were in such great tune and support with one another. I really feel like my doctors didn't know what to expect either and they were just being overly precaucious. I was the first "case" of a couple being tested positive cf carriers and for a baby having cf in their office so i kinda felt like everyone felt sorry for us and i was babied a little more through out my pregnancy. As you know- it is a scary thing and you really don't know what is right or wrong or what to expect when you are going through such an emotional rollercoaster. So you rely on the so called experts! Again, i am so sorry you had to go through such an experience when it could have been prevented through thorough OB and specialists care.
Much love,
Blythe
mom to Brinly 21mo w/cf, Birgess 4 w/o and baby due 8/8 w/o
Hello everyone. I am new to the forum. I am a new
wife to a wonderful man that has cf.. Just recently we found
out that i am a carrier of the most common strand. this
concerns us with having children. If any of you have any good
information on what is available to us that would be great.
<br>
<br>
Marie<br>
<br>
Wife to BJ 27 w/cf <img src="i/expressions/face-icon-small-wink.gif" border="0">
wife to a wonderful man that has cf.. Just recently we found
out that i am a carrier of the most common strand. this
concerns us with having children. If any of you have any good
information on what is available to us that would be great.
<br>
<br>
Marie<br>
<br>
Wife to BJ 27 w/cf <img src="i/expressions/face-icon-small-wink.gif" border="0">
Thanks so much for sharing your story Renee and Blythe it helps so much!
Marie,
You need to go to the home page and click on Julie and Mark's Link, they are going through a similar situation and you can find a lot of information there. Julie just conceived two babies! via IVF, her husband has CF but she is not a carrier of the gene. So check it out.
Jen
Marie,
You need to go to the home page and click on Julie and Mark's Link, they are going through a similar situation and you can find a lot of information there. Julie just conceived two babies! via IVF, her husband has CF but she is not a carrier of the gene. So check it out.
Jen
Jen,<br>
<br>
Thank you so much. I have been in email contact with Julie.
I am getting alot of info that will help with the decision
that we need to make. My husband put us on a five year plan
when we met. Well now we have three years left to go till we
can realisticly plan for a baby. I just want all the info
that i can so that i can educate my husband on it so that we can
make a sound judgment. Thanks again. <br>
<br>
Marie<br>
<br>
Wife of BJ 27 w/cf
<br>
Thank you so much. I have been in email contact with Julie.
I am getting alot of info that will help with the decision
that we need to make. My husband put us on a five year plan
when we met. Well now we have three years left to go till we
can realisticly plan for a baby. I just want all the info
that i can so that i can educate my husband on it so that we can
make a sound judgment. Thanks again. <br>
<br>
Marie<br>
<br>
Wife of BJ 27 w/cf
fourkidsmom
New member
_________________________________________________________________
If you found out when you were pregnant that your baby had CF could you please tell me what specialist you saw, i.e ob/gyn, perinatologist. Also if anything ever showed up on u/s such as echogenic bowel or if there was ever any dilation of the bowel noted and if your labor was induced early, or if you delivered via planned c/section. Did the baby need surgery after birth or an enema to clear blockage.
Hate to be nosey but this would help me sooooooooooooooo much.
_________________________________________________________________
We found out when I was 7 months pregnant that our son had CF due to ultrasounds that showed an dialation/blocakage of the bowel. They then had me get an aminio which confirmed the doctors concern. I was going to our regular family doctor and they referred me to a special doctor 2 hours away who did numberous ultrasounds to keep an eye on our sons condition. They had me schedule a C-section at 38 weeks so I would not go into labor before that time, our home area was not equipped for our sons birth. We knew he would need surgery right after birth. Which at 6 hours of age, he had a 4 hour surgery. His bowel had actually burst, they said it looked like hamburger so they had to cut some of it out and they left him with an illeostomy (sp??) and a stoma bag (which part of his bowel stuck out of and we'd have to change when he stooled.) It was a nightmare going to this big city knowing something was wrong with this unborn child, the first child with my husband and the boy he wanted so badly. At that time we also did not feel comfortable with the new specialist we were seeing, and I will never forget when he came in and told us that yes, he has CF. When he was brn I don't remember our son crying right away and after they took him I remember them rushing him to the table in a small room near me, but I could not see him laying there, my husband would run back and forth, because I felt as if I was going to vomit with the spinal they gave me. They got ready to wheel me off and my husband "says aren't you going to let her see the baby" and they were like Oh, she hasn't seen the baby yet- duh......... I was like what the heck.... so they brought him over with this little hat on and I got to hold him for about 2 minutes before they took him again to ge thim ready for surgery. Sorry to ramble on but the memories are all coming back to strongly. Sometimes I think I could write about about my life, there are so many things that I could talk about.
Angie
Step mom to Brittany 14 no cf
Mom to Tyler 12 no cf, cf carrier
Mom to Brady 5 with cf
Mom to Taylor, 3 no cf but chromosome 9q 21.2 q 22.2 deletion
If you found out when you were pregnant that your baby had CF could you please tell me what specialist you saw, i.e ob/gyn, perinatologist. Also if anything ever showed up on u/s such as echogenic bowel or if there was ever any dilation of the bowel noted and if your labor was induced early, or if you delivered via planned c/section. Did the baby need surgery after birth or an enema to clear blockage.
Hate to be nosey but this would help me sooooooooooooooo much.
_________________________________________________________________
We found out when I was 7 months pregnant that our son had CF due to ultrasounds that showed an dialation/blocakage of the bowel. They then had me get an aminio which confirmed the doctors concern. I was going to our regular family doctor and they referred me to a special doctor 2 hours away who did numberous ultrasounds to keep an eye on our sons condition. They had me schedule a C-section at 38 weeks so I would not go into labor before that time, our home area was not equipped for our sons birth. We knew he would need surgery right after birth. Which at 6 hours of age, he had a 4 hour surgery. His bowel had actually burst, they said it looked like hamburger so they had to cut some of it out and they left him with an illeostomy (sp??) and a stoma bag (which part of his bowel stuck out of and we'd have to change when he stooled.) It was a nightmare going to this big city knowing something was wrong with this unborn child, the first child with my husband and the boy he wanted so badly. At that time we also did not feel comfortable with the new specialist we were seeing, and I will never forget when he came in and told us that yes, he has CF. When he was brn I don't remember our son crying right away and after they took him I remember them rushing him to the table in a small room near me, but I could not see him laying there, my husband would run back and forth, because I felt as if I was going to vomit with the spinal they gave me. They got ready to wheel me off and my husband "says aren't you going to let her see the baby" and they were like Oh, she hasn't seen the baby yet- duh......... I was like what the heck.... so they brought him over with this little hat on and I got to hold him for about 2 minutes before they took him again to ge thim ready for surgery. Sorry to ramble on but the memories are all coming back to strongly. Sometimes I think I could write about about my life, there are so many things that I could talk about.
Angie
Step mom to Brittany 14 no cf
Mom to Tyler 12 no cf, cf carrier
Mom to Brady 5 with cf
Mom to Taylor, 3 no cf but chromosome 9q 21.2 q 22.2 deletion
fourkidsmom
New member
_________________________________________________________________
If you found out when you were pregnant that your baby had CF could you please tell me what specialist you saw, i.e ob/gyn, perinatologist. Also if anything ever showed up on u/s such as echogenic bowel or if there was ever any dilation of the bowel noted and if your labor was induced early, or if you delivered via planned c/section. Did the baby need surgery after birth or an enema to clear blockage.
Hate to be nosey but this would help me sooooooooooooooo much.
_________________________________________________________________
We found out when I was 7 months pregnant that our son had CF due to ultrasounds that showed an dialation/blocakage of the bowel. They then had me get an aminio which confirmed the doctors concern. I was going to our regular family doctor and they referred me to a special doctor 2 hours away who did numberous ultrasounds to keep an eye on our sons condition. They had me schedule a C-section at 38 weeks so I would not go into labor before that time, our home area was not equipped for our sons birth. We knew he would need surgery right after birth. Which at 6 hours of age, he had a 4 hour surgery. His bowel had actually burst, they said it looked like hamburger so they had to cut some of it out and they left him with an illeostomy (sp??) and a stoma bag (which part of his bowel stuck out of and we'd have to change when he stooled.) It was a nightmare going to this big city knowing something was wrong with this unborn child, the first child with my husband and the boy he wanted so badly. At that time we also did not feel comfortable with the new specialist we were seeing, and I will never forget when he came in and told us that yes, he has CF. When he was brn I don't remember our son crying right away and after they took him I remember them rushing him to the table in a small room near me, but I could not see him laying there, my husband would run back and forth, because I felt as if I was going to vomit with the spinal they gave me. They got ready to wheel me off and my husband "says aren't you going to let her see the baby" and they were like Oh, she hasn't seen the baby yet- duh......... I was like what the heck.... so they brought him over with this little hat on and I got to hold him for about 2 minutes before they took him again to ge thim ready for surgery. Sorry to ramble on but the memories are all coming back to strongly. Sometimes I think I could write about about my life, there are so many things that I could talk about.
Angie
Step mom to Brittany 14 no cf
Mom to Tyler 12 no cf, cf carrier
Mom to Brady 5 with cf
Mom to Taylor, 3 no cf but chromosome 9q 21.2 q 22.2 deletion
If you found out when you were pregnant that your baby had CF could you please tell me what specialist you saw, i.e ob/gyn, perinatologist. Also if anything ever showed up on u/s such as echogenic bowel or if there was ever any dilation of the bowel noted and if your labor was induced early, or if you delivered via planned c/section. Did the baby need surgery after birth or an enema to clear blockage.
Hate to be nosey but this would help me sooooooooooooooo much.
_________________________________________________________________
We found out when I was 7 months pregnant that our son had CF due to ultrasounds that showed an dialation/blocakage of the bowel. They then had me get an aminio which confirmed the doctors concern. I was going to our regular family doctor and they referred me to a special doctor 2 hours away who did numberous ultrasounds to keep an eye on our sons condition. They had me schedule a C-section at 38 weeks so I would not go into labor before that time, our home area was not equipped for our sons birth. We knew he would need surgery right after birth. Which at 6 hours of age, he had a 4 hour surgery. His bowel had actually burst, they said it looked like hamburger so they had to cut some of it out and they left him with an illeostomy (sp??) and a stoma bag (which part of his bowel stuck out of and we'd have to change when he stooled.) It was a nightmare going to this big city knowing something was wrong with this unborn child, the first child with my husband and the boy he wanted so badly. At that time we also did not feel comfortable with the new specialist we were seeing, and I will never forget when he came in and told us that yes, he has CF. When he was brn I don't remember our son crying right away and after they took him I remember them rushing him to the table in a small room near me, but I could not see him laying there, my husband would run back and forth, because I felt as if I was going to vomit with the spinal they gave me. They got ready to wheel me off and my husband "says aren't you going to let her see the baby" and they were like Oh, she hasn't seen the baby yet- duh......... I was like what the heck.... so they brought him over with this little hat on and I got to hold him for about 2 minutes before they took him again to ge thim ready for surgery. Sorry to ramble on but the memories are all coming back to strongly. Sometimes I think I could write about about my life, there are so many things that I could talk about.
Angie
Step mom to Brittany 14 no cf
Mom to Tyler 12 no cf, cf carrier
Mom to Brady 5 with cf
Mom to Taylor, 3 no cf but chromosome 9q 21.2 q 22.2 deletion
fourkidsmom
New member
We found out when I was 7 months pregnant that our son had CF due to ultrasounds that showed an dialation/blocakage of the bowel. They then had me get an aminio which confirmed the doctors concern. I was going to our regular family doctor and they referred me to a special doctor 2 hours away who did numberous ultrasounds to keep an eye on our sons condition. They had me schedule a C-section at 38 weeks so I would not go into labor before that time, our home area was not equipped for our sons birth. We knew he would need surgery right after birth. Which at 6 hours of age, he had a 4 hour surgery. His bowel had actually burst, they said it looked like hamburger so they had to cut some of it out and they left him with an illeostomy (sp??) and a stoma bag (which part of his bowel stuck out of and we'd have to change when he stooled.) It was a nightmare going to this big city knowing something was wrong with this unborn child, the first child with my husband and the boy he wanted so badly. At that time we also did not feel comfortable with the new specialist we were seeing, and I will never forget when he came in and told us that yes, he has CF. When he was brn I don't remember our son crying right away and after they took him I remember them rushing him to the table in a small room near me, but I could not see him laying there, my husband would run back and forth, because I felt as if I was going to vomit with the spinal they gave me. They got ready to wheel me off and my husband "says aren't you going to let her see the baby" and they were like Oh, she hasn't seen the baby yet- duh......... I was like what the heck.... so they brought him over with this little hat on and I got to hold him for about 2 minutes before they took him again to ge thim ready for surgery. Sorry to ramble on but the memories are all coming back to strongly. Sometimes I think I could write about about my life, there are so many things that I could talk about.
Angie
Step mom to Brittany 14 no cf
Mom to Tyler 12 no cf, cf carrier
Mom to Brady 5 with cf
Mom to Taylor, 3 no cf but chromosome 9q 21.2 q 22.2 deletion
Angie
Step mom to Brittany 14 no cf
Mom to Tyler 12 no cf, cf carrier
Mom to Brady 5 with cf
Mom to Taylor, 3 no cf but chromosome 9q 21.2 q 22.2 deletion
Jen, I was glad to read your post. You and I wrote to each other a few times while we were both expecting (I had a baby girl Sept. 3 with CF) and I've been meaning to get in contact with you to see how Andrew has been doing. I asked my mom and sister to put Andrew on their prayer list right after he was born, and they have both been asking me a lot lately for an update on his situation. I haven't been on the boards in a really long time and just popped in this morning for the first time in months.
I know you wrote that Andrew has some major brain damage, and I'm so sorry to hear that. How are your days, and what are the doctors' expectations of him? He is such a beautiful little guy!
It's very angering reading about the medical team so slow to respond to your pregnancy issues, and I really hope that policies change at that hospital to prevent this from happening to anyone else.
-- Jenica
I know you wrote that Andrew has some major brain damage, and I'm so sorry to hear that. How are your days, and what are the doctors' expectations of him? He is such a beautiful little guy!
It's very angering reading about the medical team so slow to respond to your pregnancy issues, and I really hope that policies change at that hospital to prevent this from happening to anyone else.
-- Jenica
I am looking at getting more info on ivf and pgd. If any of
you have gone though this please let me know what all of the steps
are. I am fairly new to the cf world and don't have much
knowledge on what is best for having the ivf and pgd tests done.
Please Help. I want to have our own children.
<br>
<br>
<br>
<br>
you have gone though this please let me know what all of the steps
are. I am fairly new to the cf world and don't have much
knowledge on what is best for having the ivf and pgd tests done.
Please Help. I want to have our own children.
<br>
<br>
<br>
<br>