Pregnant - was also posted in "Newly Diagnosed"

sdavis227 · Nov 25, 2006

Someone had suggested that I post this in here:

Hello everyone. My name is Shannon and I wanted to introduce myself and maybe get a little insight from those of you who are raising a child/children with CF.
I am 23 years old and my husband and I are expecting our 2nd little boy in the middle of March. When I was around 17 weeks pregnant, we went in for a regular ultrasound where the doctor found that the baby had a "bright bowel". What he told me was that it could be one of three things: I had bled (not known it) and the baby swallowed some blood, the baby could have down syndrome, or the baby had CF.
After doing research, I was most concerned about down syndrome as hubby and I do not know of anyone in our families with CF. I went in for AFP tests twice and both times the results were high. Since AFP levels with down syndrome babies are usually low and the baby had other things (nose bone), we pretty much ruled out down syndrome but now the doctors started talking about spina bifida. After the second ultrasound, about 3 weeks later, doctors said the spine looked great and that they would be able to catch something like 96% of spina bifida cases. Hubby and I had taken CF carrier tests and around a week later I received a call from the doctor saying that both hubby and I are carriers.
This took me totally by surprise as this was the last thing I thought this "bright spot" was all about. Ever since, I have been trying to educate myself as much as I can about CF. We are going to see the genetic counselor on Monday and I have many questions that I am hoping she can answer.
My biggest concern is with the first few years of life. Has anyone here gotten a diagnosis this early? I have been wondering about this "bright spot", whether it is a meconium illeus or what it would be. Wondering what I should expect in the first few months. I know that no one can tell me how bad this is going to be, but that's what terrifies me.
If anyone has any information, it would be greatly appreciated. Sorry for the long post.
Shannon

sdavis227 · Nov 25, 2006

Someone had suggested that I post this in here:

Hello everyone. My name is Shannon and I wanted to introduce myself and maybe get a little insight from those of you who are raising a child/children with CF.
I am 23 years old and my husband and I are expecting our 2nd little boy in the middle of March. When I was around 17 weeks pregnant, we went in for a regular ultrasound where the doctor found that the baby had a "bright bowel". What he told me was that it could be one of three things: I had bled (not known it) and the baby swallowed some blood, the baby could have down syndrome, or the baby had CF.
After doing research, I was most concerned about down syndrome as hubby and I do not know of anyone in our families with CF. I went in for AFP tests twice and both times the results were high. Since AFP levels with down syndrome babies are usually low and the baby had other things (nose bone), we pretty much ruled out down syndrome but now the doctors started talking about spina bifida. After the second ultrasound, about 3 weeks later, doctors said the spine looked great and that they would be able to catch something like 96% of spina bifida cases. Hubby and I had taken CF carrier tests and around a week later I received a call from the doctor saying that both hubby and I are carriers.
This took me totally by surprise as this was the last thing I thought this "bright spot" was all about. Ever since, I have been trying to educate myself as much as I can about CF. We are going to see the genetic counselor on Monday and I have many questions that I am hoping she can answer.
My biggest concern is with the first few years of life. Has anyone here gotten a diagnosis this early? I have been wondering about this "bright spot", whether it is a meconium illeus or what it would be. Wondering what I should expect in the first few months. I know that no one can tell me how bad this is going to be, but that's what terrifies me.
If anyone has any information, it would be greatly appreciated. Sorry for the long post.
Shannon

sdavis227 · Nov 25, 2006

Someone had suggested that I post this in here:

Hello everyone. My name is Shannon and I wanted to introduce myself and maybe get a little insight from those of you who are raising a child/children with CF.
I am 23 years old and my husband and I are expecting our 2nd little boy in the middle of March. When I was around 17 weeks pregnant, we went in for a regular ultrasound where the doctor found that the baby had a "bright bowel". What he told me was that it could be one of three things: I had bled (not known it) and the baby swallowed some blood, the baby could have down syndrome, or the baby had CF.
After doing research, I was most concerned about down syndrome as hubby and I do not know of anyone in our families with CF. I went in for AFP tests twice and both times the results were high. Since AFP levels with down syndrome babies are usually low and the baby had other things (nose bone), we pretty much ruled out down syndrome but now the doctors started talking about spina bifida. After the second ultrasound, about 3 weeks later, doctors said the spine looked great and that they would be able to catch something like 96% of spina bifida cases. Hubby and I had taken CF carrier tests and around a week later I received a call from the doctor saying that both hubby and I are carriers.
This took me totally by surprise as this was the last thing I thought this "bright spot" was all about. Ever since, I have been trying to educate myself as much as I can about CF. We are going to see the genetic counselor on Monday and I have many questions that I am hoping she can answer.
My biggest concern is with the first few years of life. Has anyone here gotten a diagnosis this early? I have been wondering about this "bright spot", whether it is a meconium illeus or what it would be. Wondering what I should expect in the first few months. I know that no one can tell me how bad this is going to be, but that's what terrifies me.
If anyone has any information, it would be greatly appreciated. Sorry for the long post.
Shannon

sdelorenzo · Nov 25, 2006

Pregnant - was also posted in "Newly Diagnosed

Welcome! My son was diagnosed through ultrasound as well. He had bright bowel and was born with meconium illeus. He has done fantastic since he was released from the hospital when he was two weeks old. Since we knew ahead of time that he would have meconium illeus we were able to find a good surgeon before his birth. He avoided surgery due to the many enemas that cleared his bowels.

Don't be surprised if the genetic counselor doesn't have a lot of questions she can answer for you. Sometimes they don't have a lot of accurate info. Genetic counselors are experts on how genes are transfered, not on cf. Your best bet would be to go to
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/FindCareCenter/
">http://www.cff.org/LivingWithCF/FindCareCenter/
</a>and find a cf center near you. Then call and ask to set up an appointment with the head pulmonologist that works with cf kids. They will be able to answer questions to you about cf as well as recommend a pediatric GI doctor and surgeon to be available to your child when they are born. It is also best to deliver at a hospital that has a high level of pediatric intensive care and close to the children's hospital in case your child needs to be moved. Your son should be stable at birth even with meconium illeus, it is just you want the highest trained nurses and doctors. Also, don't ever be afraid to speak up for your child. You will be their best advocate. Doctors unfortunately don't have all of the answers. You are already doing a great job of finding out as much info as possible. Send me an e-mail at sdelorenzo@sbcglobal.net and I will pass on some info about meconium illeus.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

sdelorenzo · Nov 25, 2006

Pregnant - was also posted in "Newly Diagnosed

Welcome! My son was diagnosed through ultrasound as well. He had bright bowel and was born with meconium illeus. He has done fantastic since he was released from the hospital when he was two weeks old. Since we knew ahead of time that he would have meconium illeus we were able to find a good surgeon before his birth. He avoided surgery due to the many enemas that cleared his bowels.

Don't be surprised if the genetic counselor doesn't have a lot of questions she can answer for you. Sometimes they don't have a lot of accurate info. Genetic counselors are experts on how genes are transfered, not on cf. Your best bet would be to go to
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/FindCareCenter/
">http://www.cff.org/LivingWithCF/FindCareCenter/
</a>and find a cf center near you. Then call and ask to set up an appointment with the head pulmonologist that works with cf kids. They will be able to answer questions to you about cf as well as recommend a pediatric GI doctor and surgeon to be available to your child when they are born. It is also best to deliver at a hospital that has a high level of pediatric intensive care and close to the children's hospital in case your child needs to be moved. Your son should be stable at birth even with meconium illeus, it is just you want the highest trained nurses and doctors. Also, don't ever be afraid to speak up for your child. You will be their best advocate. Doctors unfortunately don't have all of the answers. You are already doing a great job of finding out as much info as possible. Send me an e-mail at sdelorenzo@sbcglobal.net and I will pass on some info about meconium illeus.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

sdelorenzo · Nov 25, 2006

Pregnant - was also posted in "Newly Diagnosed

Welcome! My son was diagnosed through ultrasound as well. He had bright bowel and was born with meconium illeus. He has done fantastic since he was released from the hospital when he was two weeks old. Since we knew ahead of time that he would have meconium illeus we were able to find a good surgeon before his birth. He avoided surgery due to the many enemas that cleared his bowels.

Don't be surprised if the genetic counselor doesn't have a lot of questions she can answer for you. Sometimes they don't have a lot of accurate info. Genetic counselors are experts on how genes are transfered, not on cf. Your best bet would be to go to
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/FindCareCenter/
">http://www.cff.org/LivingWithCF/FindCareCenter/
</a>and find a cf center near you. Then call and ask to set up an appointment with the head pulmonologist that works with cf kids. They will be able to answer questions to you about cf as well as recommend a pediatric GI doctor and surgeon to be available to your child when they are born. It is also best to deliver at a hospital that has a high level of pediatric intensive care and close to the children's hospital in case your child needs to be moved. Your son should be stable at birth even with meconium illeus, it is just you want the highest trained nurses and doctors. Also, don't ever be afraid to speak up for your child. You will be their best advocate. Doctors unfortunately don't have all of the answers. You are already doing a great job of finding out as much info as possible. Send me an e-mail at sdelorenzo@sbcglobal.net and I will pass on some info about meconium illeus.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

sdavis227 · Nov 25, 2006

Pregnant - was also posted in "Newly Diagnosed

Hi Sharon. I had wondered how much the genetic counselor would know since our OB doctor could not answer any of my questions. I had also wondered if I would be able to see the CF doctor before the baby was born, and am happy to hear that you were able to. Being by the children's hospital is also a great idea. Where my OB center is now, I do not have the option to deliver at the same hospital as the children's hospital, but I have been thinking of switching. How long did it take for the bowel to clear and why did he need to be in the hospital for two weeks?
Thanks for your wonderful response!
Shannon

sdavis227 · Nov 25, 2006

Pregnant - was also posted in "Newly Diagnosed

Hi Sharon. I had wondered how much the genetic counselor would know since our OB doctor could not answer any of my questions. I had also wondered if I would be able to see the CF doctor before the baby was born, and am happy to hear that you were able to. Being by the children's hospital is also a great idea. Where my OB center is now, I do not have the option to deliver at the same hospital as the children's hospital, but I have been thinking of switching. How long did it take for the bowel to clear and why did he need to be in the hospital for two weeks?
Thanks for your wonderful response!
Shannon

sdavis227 · Nov 25, 2006

Pregnant - was also posted in "Newly Diagnosed

Hi Sharon. I had wondered how much the genetic counselor would know since our OB doctor could not answer any of my questions. I had also wondered if I would be able to see the CF doctor before the baby was born, and am happy to hear that you were able to. Being by the children's hospital is also a great idea. Where my OB center is now, I do not have the option to deliver at the same hospital as the children's hospital, but I have been thinking of switching. How long did it take for the bowel to clear and why did he need to be in the hospital for two weeks?
Thanks for your wonderful response!
Shannon

NoExcuses · Nov 25, 2006

Pregnant - was also posted in

Shannon I would suggest reading my series of blog postings, the irst of which is titled "Warwick Letter". There are about 12 letters in the series and it will give some in-depth insight (if you want to learn all that you can about Cystic Fibrosis, treatment, etc) about the disease.

Dr. Warwick is from the University of Minnesota and has been working with CF patients since the 1960s. He has seen life expectancy with this disease change from 5 years of age to over 50 (in his CF center this is the average life expectancy for 2005). He has been instrumental in the progress of "thinking differently" about the disease and expanding life expectancy.

Take a look.

NoExcuses · Nov 25, 2006

Pregnant - was also posted in

Shannon I would suggest reading my series of blog postings, the irst of which is titled "Warwick Letter". There are about 12 letters in the series and it will give some in-depth insight (if you want to learn all that you can about Cystic Fibrosis, treatment, etc) about the disease.

Dr. Warwick is from the University of Minnesota and has been working with CF patients since the 1960s. He has seen life expectancy with this disease change from 5 years of age to over 50 (in his CF center this is the average life expectancy for 2005). He has been instrumental in the progress of "thinking differently" about the disease and expanding life expectancy.

Take a look.

NoExcuses · Nov 25, 2006

Pregnant - was also posted in

Shannon I would suggest reading my series of blog postings, the irst of which is titled "Warwick Letter". There are about 12 letters in the series and it will give some in-depth insight (if you want to learn all that you can about Cystic Fibrosis, treatment, etc) about the disease.

Dr. Warwick is from the University of Minnesota and has been working with CF patients since the 1960s. He has seen life expectancy with this disease change from 5 years of age to over 50 (in his CF center this is the average life expectancy for 2005). He has been instrumental in the progress of "thinking differently" about the disease and expanding life expectancy.

Take a look.

Emily65Roses · Nov 25, 2006

Pregnant - was also posted in "Newly Diagnosed

I was diagnosed at 2 days old. And that was for the same reason, meconium ileus. I had to have it surgically removed that same day (they tried everything with me, enemas, you name it, nothing worked, so they had to cut it out). So I wasn't diagnosed before I was born (though this was 1984, so there's no real surprise there), but I was diagnosed very early.

Just for your personal information... I hate when doctors make a big deal out of family history. Yes, it's genetic. But it's *very* common for someone to have NO family history whatsoever and have a CF child. My father has a sister, my mother has 5 siblings (4 of whom had children before my parents did, I have something like 13 cousins), and I am still the first and only one with CF in my entire family. And I might add, I'm not at all unusual. We get a lot of CFers here who are the first and only ones in their family.

Emily65Roses · Nov 25, 2006

Pregnant - was also posted in "Newly Diagnosed

I was diagnosed at 2 days old. And that was for the same reason, meconium ileus. I had to have it surgically removed that same day (they tried everything with me, enemas, you name it, nothing worked, so they had to cut it out). So I wasn't diagnosed before I was born (though this was 1984, so there's no real surprise there), but I was diagnosed very early.

Just for your personal information... I hate when doctors make a big deal out of family history. Yes, it's genetic. But it's *very* common for someone to have NO family history whatsoever and have a CF child. My father has a sister, my mother has 5 siblings (4 of whom had children before my parents did, I have something like 13 cousins), and I am still the first and only one with CF in my entire family. And I might add, I'm not at all unusual. We get a lot of CFers here who are the first and only ones in their family.

Emily65Roses · Nov 25, 2006

Pregnant - was also posted in "Newly Diagnosed

I was diagnosed at 2 days old. And that was for the same reason, meconium ileus. I had to have it surgically removed that same day (they tried everything with me, enemas, you name it, nothing worked, so they had to cut it out). So I wasn't diagnosed before I was born (though this was 1984, so there's no real surprise there), but I was diagnosed very early.

Just for your personal information... I hate when doctors make a big deal out of family history. Yes, it's genetic. But it's *very* common for someone to have NO family history whatsoever and have a CF child. My father has a sister, my mother has 5 siblings (4 of whom had children before my parents did, I have something like 13 cousins), and I am still the first and only one with CF in my entire family. And I might add, I'm not at all unusual. We get a lot of CFers here who are the first and only ones in their family.

zoeg · Nov 25, 2006

Pregnant - was also posted in "Newly Diagnosed

Hi Shannon,
I have a one year old with CF. On our big ultrasound they also noticed a bright bowel. They tried to do an amnio, but didn't get enough of a fluid sample. My OB had me see a perinatologist throughout the rest of the pregnancy to check on the bowel. It actually improved throughout and because I had been spotting at the beginning, they thought it probably was not CF (even though we had since found out we were carriers. I think they just didn't want me to worry the whole pregnancy.) Anyway, when Kate was born she did not have any issues with her bowels and everything went very smooth. She was diagnosed with CF about two months later because she was not gaining weight. I pretty much knew in my heart she had it though the minute she had that bright bowel. I'm not a big poster, but I lurk on here a ton. These people really know a ton and make you not feel so alone. And let me tell you, my one year old is doing great! She has had her share of colds (right now we are on day 10 of a nasty one) but overall her life is not much different than any other child. Plus, I really believe that the research and medicines are getting better that our kids will eventually see a cure of some sort!
Zoe mom of Kate

zoeg · Nov 25, 2006

Pregnant - was also posted in "Newly Diagnosed

Hi Shannon,
I have a one year old with CF. On our big ultrasound they also noticed a bright bowel. They tried to do an amnio, but didn't get enough of a fluid sample. My OB had me see a perinatologist throughout the rest of the pregnancy to check on the bowel. It actually improved throughout and because I had been spotting at the beginning, they thought it probably was not CF (even though we had since found out we were carriers. I think they just didn't want me to worry the whole pregnancy.) Anyway, when Kate was born she did not have any issues with her bowels and everything went very smooth. She was diagnosed with CF about two months later because she was not gaining weight. I pretty much knew in my heart she had it though the minute she had that bright bowel. I'm not a big poster, but I lurk on here a ton. These people really know a ton and make you not feel so alone. And let me tell you, my one year old is doing great! She has had her share of colds (right now we are on day 10 of a nasty one) but overall her life is not much different than any other child. Plus, I really believe that the research and medicines are getting better that our kids will eventually see a cure of some sort!
Zoe mom of Kate

zoeg · Nov 25, 2006

Pregnant - was also posted in "Newly Diagnosed

Hi Shannon,
I have a one year old with CF. On our big ultrasound they also noticed a bright bowel. They tried to do an amnio, but didn't get enough of a fluid sample. My OB had me see a perinatologist throughout the rest of the pregnancy to check on the bowel. It actually improved throughout and because I had been spotting at the beginning, they thought it probably was not CF (even though we had since found out we were carriers. I think they just didn't want me to worry the whole pregnancy.) Anyway, when Kate was born she did not have any issues with her bowels and everything went very smooth. She was diagnosed with CF about two months later because she was not gaining weight. I pretty much knew in my heart she had it though the minute she had that bright bowel. I'm not a big poster, but I lurk on here a ton. These people really know a ton and make you not feel so alone. And let me tell you, my one year old is doing great! She has had her share of colds (right now we are on day 10 of a nasty one) but overall her life is not much different than any other child. Plus, I really believe that the research and medicines are getting better that our kids will eventually see a cure of some sort!
Zoe mom of Kate

JRPandTJP · Nov 25, 2006

Pregnant - was also posted in

There are several wonderful moms here who were diagnosed and have infants right now doing very well. With the right information, breast milk, good nutrition later, lots of love (of course), good health care from your CF and pediatric teams, many babies won't have issues, gain well, and are generally very healthy. I agree wholeheartedly with Amy, read her blogs about Warwick just to get an idea what good care should be about.

Also, there are some good resource links regarding the benefits of breastfeeding as well as some stories from moms like you. Many of us were not as fortunate to be diagnosed prenatally, so many of the issues you'll read about will be avoided all together because you will be monitoring things right from the start. The stories include how they worked through issues such as meconium illeus, bowel surgery, problems from being undiagnosed...all show how strong they both were and how wonderfully their babies went on to do. Visit www.cfnutrition4life.com and click breastfeeding support. You will also find many women combine approaches and do well too.

Ask lots of questions here are a few topics of recent discussions with prenatal moms:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=9666&highlight_key=y&keyword1=prenatal
">http://forums.cysticfibrosis.c...y=y&keyword1=prenatal
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=9232&highlight_key=y&keyword1=ejwiegert
">http://forums.cysticfibrosis.c...=y&keyword1=ejwiegert
</a>
We are here, have been scared, have found hope and will continue to help anyone we can. Know that you are supported.

You may PM me if you wish for anything specific or email me through the site above.

Warmly,
Jody

JRPandTJP · Nov 25, 2006

Pregnant - was also posted in

There are several wonderful moms here who were diagnosed and have infants right now doing very well. With the right information, breast milk, good nutrition later, lots of love (of course), good health care from your CF and pediatric teams, many babies won't have issues, gain well, and are generally very healthy. I agree wholeheartedly with Amy, read her blogs about Warwick just to get an idea what good care should be about.

Also, there are some good resource links regarding the benefits of breastfeeding as well as some stories from moms like you. Many of us were not as fortunate to be diagnosed prenatally, so many of the issues you'll read about will be avoided all together because you will be monitoring things right from the start. The stories include how they worked through issues such as meconium illeus, bowel surgery, problems from being undiagnosed...all show how strong they both were and how wonderfully their babies went on to do. Visit www.cfnutrition4life.com and click breastfeeding support. You will also find many women combine approaches and do well too.

Ask lots of questions here are a few topics of recent discussions with prenatal moms:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=9666&highlight_key=y&keyword1=prenatal
">http://forums.cysticfibrosis.c...y=y&keyword1=prenatal
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=9232&highlight_key=y&keyword1=ejwiegert
">http://forums.cysticfibrosis.c...=y&keyword1=ejwiegert
</a>
We are here, have been scared, have found hope and will continue to help anyone we can. Know that you are supported.

You may PM me if you wish for anything specific or email me through the site above.

Warmly,
Jody

Pregnant - was also posted in "Newly Diagnosed"

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