Prenatal diagnosis

missymoo · Sep 28, 2008

I'm not really sure what I'm after...perhaps I just need to get things out, so bear with me...

We are a young couple with a healthy 14 month old girl and have just found out at our 19 week scan that our baby has CF. This was found when the scan showed up an echogenic bowel plus baby also had choroid plexus cysts. After gene testing me (which found I was a CF carrier) and then having an amnio and then testing my husband (who obviously is also a carrier) we were given the news last Thursday. No other abnormalities have been detected.

At first we were distraught - shed many tears for many hours and was only told at the time that we still had "choices". We were on holiday at the time, so an appointment was made for today, which we have later on.

At first we thought theres no way we can can cope with this and were thinking of having a termination. I guess we were so upset we weren't thinking clearly. When the fog began to clear, we decided to get and do some research. We found this site and it has been very informative. BUT it has confused us even further because we are still swinging between the two choices. Obviously I don't want to make a hard and fast decision until we talk to the doctors today, but I am so confused, upset, devastated, emotional and the rest! I guess these are the normal emotions someone has when they are given such news.

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. We have great family support but I'm also worried about the financial stress this is going to cause us. I know that shouldn't be important, but I can't help but think about it. I don't even know what sort of financial help I am entitled to here...

So, I guess what I want to know is how did everyone cope initially? Are there things I should be doing to get more information? And any other pertinent things you think I should know would be greatly appreciated. I'm just so confused...

Thanks for listening.

ETA: I'm sorry this is my first post so I should have introduced myself! I'm Shell, hubby is Gav, and Bella is our wee girl. And baby is a boy.

missymoo · Sep 28, 2008

I'm not really sure what I'm after...perhaps I just need to get things out, so bear with me...

We are a young couple with a healthy 14 month old girl and have just found out at our 19 week scan that our baby has CF. This was found when the scan showed up an echogenic bowel plus baby also had choroid plexus cysts. After gene testing me (which found I was a CF carrier) and then having an amnio and then testing my husband (who obviously is also a carrier) we were given the news last Thursday. No other abnormalities have been detected.

At first we were distraught - shed many tears for many hours and was only told at the time that we still had "choices". We were on holiday at the time, so an appointment was made for today, which we have later on.

At first we thought theres no way we can can cope with this and were thinking of having a termination. I guess we were so upset we weren't thinking clearly. When the fog began to clear, we decided to get and do some research. We found this site and it has been very informative. BUT it has confused us even further because we are still swinging between the two choices. Obviously I don't want to make a hard and fast decision until we talk to the doctors today, but I am so confused, upset, devastated, emotional and the rest! I guess these are the normal emotions someone has when they are given such news.

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. We have great family support but I'm also worried about the financial stress this is going to cause us. I know that shouldn't be important, but I can't help but think about it. I don't even know what sort of financial help I am entitled to here...

So, I guess what I want to know is how did everyone cope initially? Are there things I should be doing to get more information? And any other pertinent things you think I should know would be greatly appreciated. I'm just so confused...

Thanks for listening.

ETA: I'm sorry this is my first post so I should have introduced myself! I'm Shell, hubby is Gav, and Bella is our wee girl. And baby is a boy.

missymoo · Sep 28, 2008

I'm not really sure what I'm after...perhaps I just need to get things out, so bear with me...

We are a young couple with a healthy 14 month old girl and have just found out at our 19 week scan that our baby has CF. This was found when the scan showed up an echogenic bowel plus baby also had choroid plexus cysts. After gene testing me (which found I was a CF carrier) and then having an amnio and then testing my husband (who obviously is also a carrier) we were given the news last Thursday. No other abnormalities have been detected.

At first we were distraught - shed many tears for many hours and was only told at the time that we still had "choices". We were on holiday at the time, so an appointment was made for today, which we have later on.

At first we thought theres no way we can can cope with this and were thinking of having a termination. I guess we were so upset we weren't thinking clearly. When the fog began to clear, we decided to get and do some research. We found this site and it has been very informative. BUT it has confused us even further because we are still swinging between the two choices. Obviously I don't want to make a hard and fast decision until we talk to the doctors today, but I am so confused, upset, devastated, emotional and the rest! I guess these are the normal emotions someone has when they are given such news.

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. We have great family support but I'm also worried about the financial stress this is going to cause us. I know that shouldn't be important, but I can't help but think about it. I don't even know what sort of financial help I am entitled to here...

So, I guess what I want to know is how did everyone cope initially? Are there things I should be doing to get more information? And any other pertinent things you think I should know would be greatly appreciated. I'm just so confused...

Thanks for listening.

ETA: I'm sorry this is my first post so I should have introduced myself! I'm Shell, hubby is Gav, and Bella is our wee girl. And baby is a boy.

missymoo · Sep 28, 2008

I'm not really sure what I'm after...perhaps I just need to get things out, so bear with me...

We are a young couple with a healthy 14 month old girl and have just found out at our 19 week scan that our baby has CF. This was found when the scan showed up an echogenic bowel plus baby also had choroid plexus cysts. After gene testing me (which found I was a CF carrier) and then having an amnio and then testing my husband (who obviously is also a carrier) we were given the news last Thursday. No other abnormalities have been detected.

At first we were distraught - shed many tears for many hours and was only told at the time that we still had "choices". We were on holiday at the time, so an appointment was made for today, which we have later on.

At first we thought theres no way we can can cope with this and were thinking of having a termination. I guess we were so upset we weren't thinking clearly. When the fog began to clear, we decided to get and do some research. We found this site and it has been very informative. BUT it has confused us even further because we are still swinging between the two choices. Obviously I don't want to make a hard and fast decision until we talk to the doctors today, but I am so confused, upset, devastated, emotional and the rest! I guess these are the normal emotions someone has when they are given such news.

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. We have great family support but I'm also worried about the financial stress this is going to cause us. I know that shouldn't be important, but I can't help but think about it. I don't even know what sort of financial help I am entitled to here...

So, I guess what I want to know is how did everyone cope initially? Are there things I should be doing to get more information? And any other pertinent things you think I should know would be greatly appreciated. I'm just so confused...

Thanks for listening.

ETA: I'm sorry this is my first post so I should have introduced myself! I'm Shell, hubby is Gav, and Bella is our wee girl. And baby is a boy.

missymoo · Sep 28, 2008

I'm not really sure what I'm after...perhaps I just need to get things out, so bear with me...
 
 We are a young couple with a healthy 14 month old girl and have just found out at our 19 week scan that our baby has CF. This was found when the scan showed up an echogenic bowel plus baby also had choroid plexus cysts. After gene testing me (which found I was a CF carrier) and then having an amnio and then testing my husband (who obviously is also a carrier) we were given the news last Thursday. No other abnormalities have been detected.
 
 At first we were distraught - shed many tears for many hours and was only told at the time that we still had "choices". We were on holiday at the time, so an appointment was made for today, which we have later on.
 
 At first we thought theres no way we can can cope with this and were thinking of having a termination. I guess we were so upset we weren't thinking clearly. When the fog began to clear, we decided to get and do some research. We found this site and it has been very informative. BUT it has confused us even further because we are still swinging between the two choices. Obviously I don't want to make a hard and fast decision until we talk to the doctors today, but I am so confused, upset, devastated, emotional and the rest! I guess these are the normal emotions someone has when they are given such news.
 
 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. We have great family support but I'm also worried about the financial stress this is going to cause us. I know that shouldn't be important, but I can't help but think about it. I don't even know what sort of financial help I am entitled to here...
 
 So, I guess what I want to know is how did everyone cope initially? Are there things I should be doing to get more information? And any other pertinent things you think I should know would be greatly appreciated. I'm just so confused...
 
 Thanks for listening.
 
 ETA: I'm sorry this is my first post so I should have introduced myself! I'm Shell, hubby is Gav, and Bella is our wee girl. And baby is a boy.

Mommafirst · Sep 28, 2008

Hello and welcome. I'm so very sorry that you are being thrust into this CF world.

I know you have a lot to think about. And I know that NO ONE can make these decisions but you. I have no clue what I would do in your shoes. I found out my daughter has CF after she was born. Somehow in all the ultrasounds we had, they missed the echogenic bowel she most certainly had.

I can tell you that despite the devestating news of her diagnosis, the difficult times in the NICU, despite the stress and burden on our family, and the sadness of what this disease might someday become, depite all this, I wouldn't trade my daughter. She's amazing and normal and beautiful and fun and perfect. Yes she does take a bunch of pills every day, yes she will likely need a feeding tube to help her stay healthy and gain proper weight. Yes we do over an hour each day of chest phsysical therapy and see more doctors than I knew existed. But despite it all, our life is still remarkably normal.

CF is a sucky disease and some definitely fight earlier and harder than others. But there has been amazing strides in knowledge over the past few decades, resulting in longer and fuller lives.

I am absolutely in favor of a woman's choice in these matters, but I also can't imagine my life without my CF daughter.

If you have more questions, feel free to post them. And best of luck as you wade through this.

Sadly, there may be some very aggressive posters here that will come out and try to bully you here (you haven't been the first to make a post like this). HAng in there and know that you CAN make this decision for what is best for you and your baby boy and your whole family.

Mommafirst · Sep 28, 2008

Hello and welcome. I'm so very sorry that you are being thrust into this CF world.

I know you have a lot to think about. And I know that NO ONE can make these decisions but you. I have no clue what I would do in your shoes. I found out my daughter has CF after she was born. Somehow in all the ultrasounds we had, they missed the echogenic bowel she most certainly had.

I can tell you that despite the devestating news of her diagnosis, the difficult times in the NICU, despite the stress and burden on our family, and the sadness of what this disease might someday become, depite all this, I wouldn't trade my daughter. She's amazing and normal and beautiful and fun and perfect. Yes she does take a bunch of pills every day, yes she will likely need a feeding tube to help her stay healthy and gain proper weight. Yes we do over an hour each day of chest phsysical therapy and see more doctors than I knew existed. But despite it all, our life is still remarkably normal.

CF is a sucky disease and some definitely fight earlier and harder than others. But there has been amazing strides in knowledge over the past few decades, resulting in longer and fuller lives.

I am absolutely in favor of a woman's choice in these matters, but I also can't imagine my life without my CF daughter.

If you have more questions, feel free to post them. And best of luck as you wade through this.

Sadly, there may be some very aggressive posters here that will come out and try to bully you here (you haven't been the first to make a post like this). HAng in there and know that you CAN make this decision for what is best for you and your baby boy and your whole family.

Mommafirst · Sep 28, 2008

Hello and welcome. I'm so very sorry that you are being thrust into this CF world.

I know you have a lot to think about. And I know that NO ONE can make these decisions but you. I have no clue what I would do in your shoes. I found out my daughter has CF after she was born. Somehow in all the ultrasounds we had, they missed the echogenic bowel she most certainly had.

I can tell you that despite the devestating news of her diagnosis, the difficult times in the NICU, despite the stress and burden on our family, and the sadness of what this disease might someday become, depite all this, I wouldn't trade my daughter. She's amazing and normal and beautiful and fun and perfect. Yes she does take a bunch of pills every day, yes she will likely need a feeding tube to help her stay healthy and gain proper weight. Yes we do over an hour each day of chest phsysical therapy and see more doctors than I knew existed. But despite it all, our life is still remarkably normal.

CF is a sucky disease and some definitely fight earlier and harder than others. But there has been amazing strides in knowledge over the past few decades, resulting in longer and fuller lives.

I am absolutely in favor of a woman's choice in these matters, but I also can't imagine my life without my CF daughter.

If you have more questions, feel free to post them. And best of luck as you wade through this.

Sadly, there may be some very aggressive posters here that will come out and try to bully you here (you haven't been the first to make a post like this). HAng in there and know that you CAN make this decision for what is best for you and your baby boy and your whole family.

Mommafirst · Sep 28, 2008

Hello and welcome. I'm so very sorry that you are being thrust into this CF world.

I know you have a lot to think about. And I know that NO ONE can make these decisions but you. I have no clue what I would do in your shoes. I found out my daughter has CF after she was born. Somehow in all the ultrasounds we had, they missed the echogenic bowel she most certainly had.

I can tell you that despite the devestating news of her diagnosis, the difficult times in the NICU, despite the stress and burden on our family, and the sadness of what this disease might someday become, depite all this, I wouldn't trade my daughter. She's amazing and normal and beautiful and fun and perfect. Yes she does take a bunch of pills every day, yes she will likely need a feeding tube to help her stay healthy and gain proper weight. Yes we do over an hour each day of chest phsysical therapy and see more doctors than I knew existed. But despite it all, our life is still remarkably normal.

CF is a sucky disease and some definitely fight earlier and harder than others. But there has been amazing strides in knowledge over the past few decades, resulting in longer and fuller lives.

I am absolutely in favor of a woman's choice in these matters, but I also can't imagine my life without my CF daughter.

If you have more questions, feel free to post them. And best of luck as you wade through this.

Sadly, there may be some very aggressive posters here that will come out and try to bully you here (you haven't been the first to make a post like this). HAng in there and know that you CAN make this decision for what is best for you and your baby boy and your whole family.

Mommafirst · Sep 28, 2008

Hello and welcome. I'm so very sorry that you are being thrust into this CF world.
 
 I know you have a lot to think about. And I know that NO ONE can make these decisions but you. I have no clue what I would do in your shoes. I found out my daughter has CF after she was born. Somehow in all the ultrasounds we had, they missed the echogenic bowel she most certainly had.
 
 I can tell you that despite the devestating news of her diagnosis, the difficult times in the NICU, despite the stress and burden on our family, and the sadness of what this disease might someday become, depite all this, I wouldn't trade my daughter. She's amazing and normal and beautiful and fun and perfect. Yes she does take a bunch of pills every day, yes she will likely need a feeding tube to help her stay healthy and gain proper weight. Yes we do over an hour each day of chest phsysical therapy and see more doctors than I knew existed. But despite it all, our life is still remarkably normal.
 
 CF is a sucky disease and some definitely fight earlier and harder than others. But there has been amazing strides in knowledge over the past few decades, resulting in longer and fuller lives.
 
 I am absolutely in favor of a woman's choice in these matters, but I also can't imagine my life without my CF daughter.
 
 If you have more questions, feel free to post them. And best of luck as you wade through this.
 
 Sadly, there may be some very aggressive posters here that will come out and try to bully you here (you haven't been the first to make a post like this). HAng in there and know that you CAN make this decision for what is best for you and your baby boy and your whole family.

JazzysMom · Sep 28, 2008

It would be so much easier if there was a mirror to see into the future! To know ahead of time what your child will endure.....

Sadly there is NOTHING that can predict how easy or difficult things will be. BUT I will say this.....no matter how bad things have gotten for ME I was never angry at my parents. I have lived a full life & think CF has helped me become the person I am. I have lost many friends to CF, but I also have gained a lot of friends!

This is a decision that ONLY you & your hubby can make. Take the info you find & are given & decide.....

Remember that NOONE will know for sure including doctors so dont take anything for gosple.....use it only a decision making tool!

Another thing that I want to address....you wonder how you can handle your other child along with a CFer, many many people do it & never have any notice ahead of time.

BTW I also agree with Heather on the aggressive/passionate posters. Just like the doctor....take the info & use it as a tool. IF there is anything that we can answer additional, please ask!

HUGS

JazzysMom · Sep 28, 2008

It would be so much easier if there was a mirror to see into the future! To know ahead of time what your child will endure.....

Sadly there is NOTHING that can predict how easy or difficult things will be. BUT I will say this.....no matter how bad things have gotten for ME I was never angry at my parents. I have lived a full life & think CF has helped me become the person I am. I have lost many friends to CF, but I also have gained a lot of friends!

This is a decision that ONLY you & your hubby can make. Take the info you find & are given & decide.....

Remember that NOONE will know for sure including doctors so dont take anything for gosple.....use it only a decision making tool!

Another thing that I want to address....you wonder how you can handle your other child along with a CFer, many many people do it & never have any notice ahead of time.

BTW I also agree with Heather on the aggressive/passionate posters. Just like the doctor....take the info & use it as a tool. IF there is anything that we can answer additional, please ask!

HUGS

JazzysMom · Sep 28, 2008

It would be so much easier if there was a mirror to see into the future! To know ahead of time what your child will endure.....

Sadly there is NOTHING that can predict how easy or difficult things will be. BUT I will say this.....no matter how bad things have gotten for ME I was never angry at my parents. I have lived a full life & think CF has helped me become the person I am. I have lost many friends to CF, but I also have gained a lot of friends!

This is a decision that ONLY you & your hubby can make. Take the info you find & are given & decide.....

Remember that NOONE will know for sure including doctors so dont take anything for gosple.....use it only a decision making tool!

Another thing that I want to address....you wonder how you can handle your other child along with a CFer, many many people do it & never have any notice ahead of time.

BTW I also agree with Heather on the aggressive/passionate posters. Just like the doctor....take the info & use it as a tool. IF there is anything that we can answer additional, please ask!

HUGS

JazzysMom · Sep 28, 2008

It would be so much easier if there was a mirror to see into the future! To know ahead of time what your child will endure.....

Sadly there is NOTHING that can predict how easy or difficult things will be. BUT I will say this.....no matter how bad things have gotten for ME I was never angry at my parents. I have lived a full life & think CF has helped me become the person I am. I have lost many friends to CF, but I also have gained a lot of friends!

This is a decision that ONLY you & your hubby can make. Take the info you find & are given & decide.....

Remember that NOONE will know for sure including doctors so dont take anything for gosple.....use it only a decision making tool!

Another thing that I want to address....you wonder how you can handle your other child along with a CFer, many many people do it & never have any notice ahead of time.

BTW I also agree with Heather on the aggressive/passionate posters. Just like the doctor....take the info & use it as a tool. IF there is anything that we can answer additional, please ask!

HUGS

JazzysMom · Sep 28, 2008

It would be so much easier if there was a mirror to see into the future! To know ahead of time what your child will endure.....
 
 Sadly there is NOTHING that can predict how easy or difficult things will be. BUT I will say this.....no matter how bad things have gotten for ME I was never angry at my parents. I have lived a full life & think CF has helped me become the person I am. I have lost many friends to CF, but I also have gained a lot of friends!
 
 This is a decision that ONLY you & your hubby can make. Take the info you find & are given & decide.....
 
 Remember that NOONE will know for sure including doctors so dont take anything for gosple.....use it only a decision making tool!
 
 Another thing that I want to address....you wonder how you can handle your other child along with a CFer, many many people do it & never have any notice ahead of time.
 
 BTW I also agree with Heather on the aggressive/passionate posters. Just like the doctor....take the info & use it as a tool. IF there is anything that we can answer additional, please ask!
 
 HUGS

Rebjane · Sep 28, 2008

Shell,

This is a very personal decision. However, I can tell you I was in your shoes 6 years ago at this time. I was pregnant with my second child when I had a routine ultrasound at 20 weeks which showed an echogenic bowel and bright spot on my daughter's heart. The docs scared the sh** out of us; they were not sure what it was; after much thought and tears we had an amniocentesis which gave us our daughter's diagnosis of CF prenatally. I had a healthy 4 year old son. We did have our son sweat tested to rule out CF for him(it was negative) he showed no signs of CF but it was the docs being cautious. I felt so alone while I was going through this whole process; even the docs didn't know too many women like me who had this prenatal diagnosis. My husband and I knew we were not going to terminate the pregnancy. While having a child with CF is not what I would choose for my child; she truly is a joy and a beautiful sweet smart girl. She does lots of treatments. VEST, meds, she had a rocky start, but she has a fun, happy life. Feel free to ask me questions if you so desire; but I understand what you are going through and only you and your husband can make your decision. If you click on the little pic below on my signature you can get a pretty good idea of what it's like to have a child with CF and you can see my beautiful family. Good luck and take care of yourself.

Rebjane · Sep 28, 2008

Shell,

This is a very personal decision. However, I can tell you I was in your shoes 6 years ago at this time. I was pregnant with my second child when I had a routine ultrasound at 20 weeks which showed an echogenic bowel and bright spot on my daughter's heart. The docs scared the sh** out of us; they were not sure what it was; after much thought and tears we had an amniocentesis which gave us our daughter's diagnosis of CF prenatally. I had a healthy 4 year old son. We did have our son sweat tested to rule out CF for him(it was negative) he showed no signs of CF but it was the docs being cautious. I felt so alone while I was going through this whole process; even the docs didn't know too many women like me who had this prenatal diagnosis. My husband and I knew we were not going to terminate the pregnancy. While having a child with CF is not what I would choose for my child; she truly is a joy and a beautiful sweet smart girl. She does lots of treatments. VEST, meds, she had a rocky start, but she has a fun, happy life. Feel free to ask me questions if you so desire; but I understand what you are going through and only you and your husband can make your decision. If you click on the little pic below on my signature you can get a pretty good idea of what it's like to have a child with CF and you can see my beautiful family. Good luck and take care of yourself.

Rebjane · Sep 28, 2008

Shell,

This is a very personal decision. However, I can tell you I was in your shoes 6 years ago at this time. I was pregnant with my second child when I had a routine ultrasound at 20 weeks which showed an echogenic bowel and bright spot on my daughter's heart. The docs scared the sh** out of us; they were not sure what it was; after much thought and tears we had an amniocentesis which gave us our daughter's diagnosis of CF prenatally. I had a healthy 4 year old son. We did have our son sweat tested to rule out CF for him(it was negative) he showed no signs of CF but it was the docs being cautious. I felt so alone while I was going through this whole process; even the docs didn't know too many women like me who had this prenatal diagnosis. My husband and I knew we were not going to terminate the pregnancy. While having a child with CF is not what I would choose for my child; she truly is a joy and a beautiful sweet smart girl. She does lots of treatments. VEST, meds, she had a rocky start, but she has a fun, happy life. Feel free to ask me questions if you so desire; but I understand what you are going through and only you and your husband can make your decision. If you click on the little pic below on my signature you can get a pretty good idea of what it's like to have a child with CF and you can see my beautiful family. Good luck and take care of yourself.

Rebjane · Sep 28, 2008

Shell,

This is a very personal decision. However, I can tell you I was in your shoes 6 years ago at this time. I was pregnant with my second child when I had a routine ultrasound at 20 weeks which showed an echogenic bowel and bright spot on my daughter's heart. The docs scared the sh** out of us; they were not sure what it was; after much thought and tears we had an amniocentesis which gave us our daughter's diagnosis of CF prenatally. I had a healthy 4 year old son. We did have our son sweat tested to rule out CF for him(it was negative) he showed no signs of CF but it was the docs being cautious. I felt so alone while I was going through this whole process; even the docs didn't know too many women like me who had this prenatal diagnosis. My husband and I knew we were not going to terminate the pregnancy. While having a child with CF is not what I would choose for my child; she truly is a joy and a beautiful sweet smart girl. She does lots of treatments. VEST, meds, she had a rocky start, but she has a fun, happy life. Feel free to ask me questions if you so desire; but I understand what you are going through and only you and your husband can make your decision. If you click on the little pic below on my signature you can get a pretty good idea of what it's like to have a child with CF and you can see my beautiful family. Good luck and take care of yourself.

Rebjane · Sep 28, 2008

Shell,

This is a very personal decision. However, I can tell you I was in your shoes 6 years ago at this time. I was pregnant with my second child when I had a routine ultrasound at 20 weeks which showed an echogenic bowel and bright spot on my daughter's heart. The docs scared the sh** out of us; they were not sure what it was; after much thought and tears we had an amniocentesis which gave us our daughter's diagnosis of CF prenatally. I had a healthy 4 year old son. We did have our son sweat tested to rule out CF for him(it was negative) he showed no signs of CF but it was the docs being cautious. I felt so alone while I was going through this whole process; even the docs didn't know too many women like me who had this prenatal diagnosis. My husband and I knew we were not going to terminate the pregnancy. While having a child with CF is not what I would choose for my child; she truly is a joy and a beautiful sweet smart girl. She does lots of treatments. VEST, meds, she had a rocky start, but she has a fun, happy life. Feel free to ask me questions if you so desire; but I understand what you are going through and only you and your husband can make your decision. If you click on the little pic below on my signature you can get a pretty good idea of what it's like to have a child with CF and you can see my beautiful family. Good luck and take care of yourself.

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