Pregnant with questions

M

maccole4

New member
Hi, my name is Heather. I have been on the site for awhile but just decided to post. I'm truly confused right now and would love if anyone had any answers that might help me. I have 3 children and another due later January. The new baby has CF, double Delta508. My other children are just carriers of the gene. In the ultrasounds I've been getting every 4 weeks since we found out it shows the baby has an echogenic bowel. The perintologist and my OB say no big deal? And that CF and bright bowel have nothing to do with one another. I don't believe that so I called the CF center closest to our home and talked with the CF coordinator. She told me they were wrong and I should deliver at hospital with a high level NICU and pediatric GI surgeon just in case of MI. But the OB and the perintalogist seem to think there will be no problems and make it seem as if we are over reacting. Has anyone else dealt with Echogenic bowel and Meconium Ileus, if so I would love anyone elses opinion that has dealt withthis first hand.

Heather
Mackenzie 4 w/o CF, Cole 3 w/o CF, Jake 11 mo w/o CF and TBD w/CF due January2007
 
M

maccole4

New member
Hi, my name is Heather. I have been on the site for awhile but just decided to post. I'm truly confused right now and would love if anyone had any answers that might help me. I have 3 children and another due later January. The new baby has CF, double Delta508. My other children are just carriers of the gene. In the ultrasounds I've been getting every 4 weeks since we found out it shows the baby has an echogenic bowel. The perintologist and my OB say no big deal? And that CF and bright bowel have nothing to do with one another. I don't believe that so I called the CF center closest to our home and talked with the CF coordinator. She told me they were wrong and I should deliver at hospital with a high level NICU and pediatric GI surgeon just in case of MI. But the OB and the perintalogist seem to think there will be no problems and make it seem as if we are over reacting. Has anyone else dealt with Echogenic bowel and Meconium Ileus, if so I would love anyone elses opinion that has dealt withthis first hand.

Heather
Mackenzie 4 w/o CF, Cole 3 w/o CF, Jake 11 mo w/o CF and TBD w/CF due January2007
 
M

maccole4

New member
Hi, my name is Heather. I have been on the site for awhile but just decided to post. I'm truly confused right now and would love if anyone had any answers that might help me. I have 3 children and another due later January. The new baby has CF, double Delta508. My other children are just carriers of the gene. In the ultrasounds I've been getting every 4 weeks since we found out it shows the baby has an echogenic bowel. The perintologist and my OB say no big deal? And that CF and bright bowel have nothing to do with one another. I don't believe that so I called the CF center closest to our home and talked with the CF coordinator. She told me they were wrong and I should deliver at hospital with a high level NICU and pediatric GI surgeon just in case of MI. But the OB and the perintalogist seem to think there will be no problems and make it seem as if we are over reacting. Has anyone else dealt with Echogenic bowel and Meconium Ileus, if so I would love anyone elses opinion that has dealt withthis first hand.

Heather
Mackenzie 4 w/o CF, Cole 3 w/o CF, Jake 11 mo w/o CF and TBD w/CF due January2007
 
R

Ratatosk

Administrator
Staff member
DS was born with MI and had to be lifeflighted to a hospital 250miles away with a high level NICU. We were fortunate that the local pediatric surgeon was on vacation because the one who did DS's surgery said it was very complicated. He was in surgery for well over 4 hours -- repairing damage, removing dead tissue, cleaning out the infection.

Wasn't there someone who posted on this site, whose had similar problems and the child's bowel ruptured in utero and almost died?

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=5955&highlight_key=y&keyword1=echogenic%20bowel
">http://forums.cysticfibrosis.c...rd1=echogenic%20bowel
</a>
You are not overreacting. Your child will need the best care possible and it doesn't sound like your current healthcare provider is being very proactive.
 
R

Ratatosk

Administrator
Staff member
DS was born with MI and had to be lifeflighted to a hospital 250miles away with a high level NICU. We were fortunate that the local pediatric surgeon was on vacation because the one who did DS's surgery said it was very complicated. He was in surgery for well over 4 hours -- repairing damage, removing dead tissue, cleaning out the infection.

Wasn't there someone who posted on this site, whose had similar problems and the child's bowel ruptured in utero and almost died?

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=5955&highlight_key=y&keyword1=echogenic%20bowel
">http://forums.cysticfibrosis.c...rd1=echogenic%20bowel
</a>
You are not overreacting. Your child will need the best care possible and it doesn't sound like your current healthcare provider is being very proactive.
 
R

Ratatosk

Administrator
Staff member
DS was born with MI and had to be lifeflighted to a hospital 250miles away with a high level NICU. We were fortunate that the local pediatric surgeon was on vacation because the one who did DS's surgery said it was very complicated. He was in surgery for well over 4 hours -- repairing damage, removing dead tissue, cleaning out the infection.

Wasn't there someone who posted on this site, whose had similar problems and the child's bowel ruptured in utero and almost died?

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=5955&highlight_key=y&keyword1=echogenic%20bowel
">http://forums.cysticfibrosis.c...rd1=echogenic%20bowel
</a>
You are not overreacting. Your child will need the best care possible and it doesn't sound like your current healthcare provider is being very proactive.
 
M

Mommafirst

Guest
Hi Heather -- I'm Heather too! You are NOT overreacting!! CF and bright bowel have quite a lot to do with one another, and shame on your doctor's for not knowing that. A baby with an echogenic bowel in utero is usually suspected of CF or Down's Syndrome and since they KNOW your baby has CF, I don't know why they aren't taking this more seriously.

My daughter was born with an MI and we did not see the echogenic bowel on any of the ultrasounds, nor did we know she was going to have CF. The MI was able to come out naturally with the enema they used for the scan. We were lucky, but many babies need surgery for this. I also have a friend whose CF son showed a bright bowel, and it cleared up on its own before birth. Obviously there are lots of ways this can go, I would most certainly change doctors if they don't take your very real concern seriously. I know its late in your pregnancy to change, but I would want to deliver at a hospital that has a very good NICU. Mine didn't, but Children's and the CF Center were just a mile away. Even so, having your brand new baby whisked away to another hospital is miserable. I hope you can avoid that!!

Welcome to the site!!
 
M

Mommafirst

Guest
Hi Heather -- I'm Heather too! You are NOT overreacting!! CF and bright bowel have quite a lot to do with one another, and shame on your doctor's for not knowing that. A baby with an echogenic bowel in utero is usually suspected of CF or Down's Syndrome and since they KNOW your baby has CF, I don't know why they aren't taking this more seriously.

My daughter was born with an MI and we did not see the echogenic bowel on any of the ultrasounds, nor did we know she was going to have CF. The MI was able to come out naturally with the enema they used for the scan. We were lucky, but many babies need surgery for this. I also have a friend whose CF son showed a bright bowel, and it cleared up on its own before birth. Obviously there are lots of ways this can go, I would most certainly change doctors if they don't take your very real concern seriously. I know its late in your pregnancy to change, but I would want to deliver at a hospital that has a very good NICU. Mine didn't, but Children's and the CF Center were just a mile away. Even so, having your brand new baby whisked away to another hospital is miserable. I hope you can avoid that!!

Welcome to the site!!
 
M

Mommafirst

Guest
Hi Heather -- I'm Heather too! You are NOT overreacting!! CF and bright bowel have quite a lot to do with one another, and shame on your doctor's for not knowing that. A baby with an echogenic bowel in utero is usually suspected of CF or Down's Syndrome and since they KNOW your baby has CF, I don't know why they aren't taking this more seriously.

My daughter was born with an MI and we did not see the echogenic bowel on any of the ultrasounds, nor did we know she was going to have CF. The MI was able to come out naturally with the enema they used for the scan. We were lucky, but many babies need surgery for this. I also have a friend whose CF son showed a bright bowel, and it cleared up on its own before birth. Obviously there are lots of ways this can go, I would most certainly change doctors if they don't take your very real concern seriously. I know its late in your pregnancy to change, but I would want to deliver at a hospital that has a very good NICU. Mine didn't, but Children's and the CF Center were just a mile away. Even so, having your brand new baby whisked away to another hospital is miserable. I hope you can avoid that!!

Welcome to the site!!
 
C

cfangel03

Guest
I have 3 girls. my youngest was diagnosed with cf in my belly at 17 weeks with an ecogenic bowel. no meconium illius luckily. But choose a hospital that can handle it if it does.
Now she is 3......never never been sick, not an ear infection, or cold ever.
the drugs are great these days and should keep these kids alive until a cure is found or at least into their 50's.
cf kids are gorgeous - yours will be too.
I know, I have met so many.
I am a childrens book author.
My recent book _ kyle's first crush is about a little boy, who falls in love with a little girl in pre -k. she has cf. all profit from book goes to Cf Foundation
adorable story, great illustrations. My mom did the illustrations check it out
www.kylesfirstcrush.com, or amazon.com
Good luck with your baby.....these kids are very special!
Leah Orr
orrplace1@bellsouth.net
 
C

cfangel03

Guest
I have 3 girls. my youngest was diagnosed with cf in my belly at 17 weeks with an ecogenic bowel. no meconium illius luckily. But choose a hospital that can handle it if it does.
Now she is 3......never never been sick, not an ear infection, or cold ever.
the drugs are great these days and should keep these kids alive until a cure is found or at least into their 50's.
cf kids are gorgeous - yours will be too.
I know, I have met so many.
I am a childrens book author.
My recent book _ kyle's first crush is about a little boy, who falls in love with a little girl in pre -k. she has cf. all profit from book goes to Cf Foundation
adorable story, great illustrations. My mom did the illustrations check it out
www.kylesfirstcrush.com, or amazon.com
Good luck with your baby.....these kids are very special!
Leah Orr
orrplace1@bellsouth.net
 
C

cfangel03

Guest
I have 3 girls. my youngest was diagnosed with cf in my belly at 17 weeks with an ecogenic bowel. no meconium illius luckily. But choose a hospital that can handle it if it does.
Now she is 3......never never been sick, not an ear infection, or cold ever.
the drugs are great these days and should keep these kids alive until a cure is found or at least into their 50's.
cf kids are gorgeous - yours will be too.
I know, I have met so many.
I am a childrens book author.
My recent book _ kyle's first crush is about a little boy, who falls in love with a little girl in pre -k. she has cf. all profit from book goes to Cf Foundation
adorable story, great illustrations. My mom did the illustrations check it out
www.kylesfirstcrush.com, or amazon.com
Good luck with your baby.....these kids are very special!
Leah Orr
orrplace1@bellsouth.net
 
S

sdelorenzo

Guest
Hi Heather,
Congratulations on the baby you are expecting! Sounds like you most definitely need a new perinatal doctor. My son showed bright bowel when I was 24 weeks along. I also ready had a daughter with cf so we knew that he too had cf. My son was born with meconium illeus but because the surgeon and GI doctor had a plan, he was able to avoid surgery with the help of enemas for 9 days. Please e-mail me at sdelorenzo@sbcglobal.net so I can forward you some info about meconium illeus as well as some ideas about you can do at this point.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
Hi Heather,
Congratulations on the baby you are expecting! Sounds like you most definitely need a new perinatal doctor. My son showed bright bowel when I was 24 weeks along. I also ready had a daughter with cf so we knew that he too had cf. My son was born with meconium illeus but because the surgeon and GI doctor had a plan, he was able to avoid surgery with the help of enemas for 9 days. Please e-mail me at sdelorenzo@sbcglobal.net so I can forward you some info about meconium illeus as well as some ideas about you can do at this point.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
Hi Heather,
Congratulations on the baby you are expecting! Sounds like you most definitely need a new perinatal doctor. My son showed bright bowel when I was 24 weeks along. I also ready had a daughter with cf so we knew that he too had cf. My son was born with meconium illeus but because the surgeon and GI doctor had a plan, he was able to avoid surgery with the help of enemas for 9 days. Please e-mail me at sdelorenzo@sbcglobal.net so I can forward you some info about meconium illeus as well as some ideas about you can do at this point.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
M

maccole4

New member
Thanks everyone for the respones!
I spoke again with the CF coordinator today she suggests that I be transfered to a high risk OB that might have more experience with cystic and they, the All Children's Hospital, think I should definitely change where I'm delivering. It's all very stressful I feel very overwhelmed, like I'm waiting for a disaster to happen but I don't know bad it may be. I just want the baby to be here so we can see his beautiful face and hold him. I'm just trying to find out everything I can so we can prepare for the worst and hope for the best.

Thanks
Heather
Mackenzie 4, Cole 3, Jake 11 months- CF carriers
TBD due January 2007- w /CF
 
M

maccole4

New member
Thanks everyone for the respones!
I spoke again with the CF coordinator today she suggests that I be transfered to a high risk OB that might have more experience with cystic and they, the All Children's Hospital, think I should definitely change where I'm delivering. It's all very stressful I feel very overwhelmed, like I'm waiting for a disaster to happen but I don't know bad it may be. I just want the baby to be here so we can see his beautiful face and hold him. I'm just trying to find out everything I can so we can prepare for the worst and hope for the best.

Thanks
Heather
Mackenzie 4, Cole 3, Jake 11 months- CF carriers
TBD due January 2007- w /CF
 
M

maccole4

New member
Thanks everyone for the respones!
I spoke again with the CF coordinator today she suggests that I be transfered to a high risk OB that might have more experience with cystic and they, the All Children's Hospital, think I should definitely change where I'm delivering. It's all very stressful I feel very overwhelmed, like I'm waiting for a disaster to happen but I don't know bad it may be. I just want the baby to be here so we can see his beautiful face and hold him. I'm just trying to find out everything I can so we can prepare for the worst and hope for the best.

Thanks
Heather
Mackenzie 4, Cole 3, Jake 11 months- CF carriers
TBD due January 2007- w /CF
 
R

Ratatosk

Administrator
Staff member
At least you and your doctors know ahead of time and can take precautions if need be. Fortunately things worked out with our son, but it could've gone very very badly.

With DS we had NO idea. All we knew about CF was an episode on ER. Wasn't mentioned during the US, so I assume it didn't show up then. DS was born two weeks early, and had to be suctioned by a crew from the NICU 'cuz they thought he stooled in the womb. I was told he was fine, several doctors examined him, we fed him and bathed him later in the day. About 12 hours after he was born he started hurling green stuff. Xrays, more exams -- it was determined he had a bowel obstruction and needed to be flown 250 miles away for surgery.
 
R

Ratatosk

Administrator
Staff member
At least you and your doctors know ahead of time and can take precautions if need be. Fortunately things worked out with our son, but it could've gone very very badly.

With DS we had NO idea. All we knew about CF was an episode on ER. Wasn't mentioned during the US, so I assume it didn't show up then. DS was born two weeks early, and had to be suctioned by a crew from the NICU 'cuz they thought he stooled in the womb. I was told he was fine, several doctors examined him, we fed him and bathed him later in the day. About 12 hours after he was born he started hurling green stuff. Xrays, more exams -- it was determined he had a bowel obstruction and needed to be flown 250 miles away for surgery.
 
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