Not sure if anybody is still reading this thread...but I wanted to clarify something that was posted earlier by another user...they stated that the originator of this thread would have child with the most severe form of CF. Steven (see families section, ambry genetics) stated that class 1/class 2 combinations are just as "severe" as a class 2/class 2 combination. Just wanted to clear up any confusion, if there was any....contrary to what was stated, class 1/class 2 aren't the "worst" - they are equivalent to homozygous delta508 (class 2/class 2) in terms of classic CF...
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Terminating pregnancy?
- Thread starter laxgirl
- Start date
Not sure if anybody is still reading this thread...but I wanted to clarify something that was posted earlier by another user...they stated that the originator of this thread would have child with the most severe form of CF. Steven (see families section, ambry genetics) stated that class 1/class 2 combinations are just as "severe" as a class 2/class 2 combination. Just wanted to clear up any confusion, if there was any....contrary to what was stated, class 1/class 2 aren't the "worst" - they are equivalent to homozygous delta508 (class 2/class 2) in terms of classic CF...
Not sure if anybody is still reading this thread...but I wanted to clarify something that was posted earlier by another user...they stated that the originator of this thread would have child with the most severe form of CF. Steven (see families section, ambry genetics) stated that class 1/class 2 combinations are just as "severe" as a class 2/class 2 combination. Just wanted to clear up any confusion, if there was any....contrary to what was stated, class 1/class 2 aren't the "worst" - they are equivalent to homozygous delta508 (class 2/class 2) in terms of classic CF...
Not sure if anybody is still reading this thread...but I wanted to clarify something that was posted earlier by another user...they stated that the originator of this thread would have child with the most severe form of CF. Steven (see families section, ambry genetics) stated that class 1/class 2 combinations are just as "severe" as a class 2/class 2 combination. Just wanted to clear up any confusion, if there was any....contrary to what was stated, class 1/class 2 aren't the "worst" - they are equivalent to homozygous delta508 (class 2/class 2) in terms of classic CF...
Not sure if anybody is still reading this thread...but I wanted to clarify something that was posted earlier by another user...they stated that the originator of this thread would have child with the most severe form of CF. Steven (see families section, ambry genetics) stated that class 1/class 2 combinations are just as "severe" as a class 2/class 2 combination. Just wanted to clear up any confusion, if there was any....contrary to what was stated, class 1/class 2 aren't the "worst" - they are equivalent to homozygous delta508 (class 2/class 2) in terms of classic CF...
MavinetteH
New member
I did not find out that my son now ten, had CF until he was six months old. I am not sure what I would have done if I would have heard the news before hand. The worst thing you can do is go by the words that cf is a fatal disease. Yes it is the truth. Every case of CF is different, but every year they make great strides to help fight this disease. You could have a healthy baby that could face things you would never imagine. Making a decision to teminate a pregancy is not an easy one, but look at it this way, if you decide to give this rocky road a test drive there will be happy moments. There is a little baby waiting to meet its family. My son has been pretty healthy, is a green belt in karate, swims, runs, and is very much like a regular little boy. Sometimes I look at him when he asleep and cry for him, but is it really for him, no for me, he doesnt feel differnt, he thinks we are all different. We hav had some set backs but nothing more then a family with a totally healthy baby. Good luck with any decision you make. You will always have this CF family.
MavinetteH
New member
I did not find out that my son now ten, had CF until he was six months old. I am not sure what I would have done if I would have heard the news before hand. The worst thing you can do is go by the words that cf is a fatal disease. Yes it is the truth. Every case of CF is different, but every year they make great strides to help fight this disease. You could have a healthy baby that could face things you would never imagine. Making a decision to teminate a pregancy is not an easy one, but look at it this way, if you decide to give this rocky road a test drive there will be happy moments. There is a little baby waiting to meet its family. My son has been pretty healthy, is a green belt in karate, swims, runs, and is very much like a regular little boy. Sometimes I look at him when he asleep and cry for him, but is it really for him, no for me, he doesnt feel differnt, he thinks we are all different. We hav had some set backs but nothing more then a family with a totally healthy baby. Good luck with any decision you make. You will always have this CF family.
MavinetteH
New member
I did not find out that my son now ten, had CF until he was six months old. I am not sure what I would have done if I would have heard the news before hand. The worst thing you can do is go by the words that cf is a fatal disease. Yes it is the truth. Every case of CF is different, but every year they make great strides to help fight this disease. You could have a healthy baby that could face things you would never imagine. Making a decision to teminate a pregancy is not an easy one, but look at it this way, if you decide to give this rocky road a test drive there will be happy moments. There is a little baby waiting to meet its family. My son has been pretty healthy, is a green belt in karate, swims, runs, and is very much like a regular little boy. Sometimes I look at him when he asleep and cry for him, but is it really for him, no for me, he doesnt feel differnt, he thinks we are all different. We hav had some set backs but nothing more then a family with a totally healthy baby. Good luck with any decision you make. You will always have this CF family.
MavinetteH
New member
I did not find out that my son now ten, had CF until he was six months old. I am not sure what I would have done if I would have heard the news before hand. The worst thing you can do is go by the words that cf is a fatal disease. Yes it is the truth. Every case of CF is different, but every year they make great strides to help fight this disease. You could have a healthy baby that could face things you would never imagine. Making a decision to teminate a pregancy is not an easy one, but look at it this way, if you decide to give this rocky road a test drive there will be happy moments. There is a little baby waiting to meet its family. My son has been pretty healthy, is a green belt in karate, swims, runs, and is very much like a regular little boy. Sometimes I look at him when he asleep and cry for him, but is it really for him, no for me, he doesnt feel differnt, he thinks we are all different. We hav had some set backs but nothing more then a family with a totally healthy baby. Good luck with any decision you make. You will always have this CF family.
MavinetteH
New member
I did not find out that my son now ten, had CF until he was six months old. I am not sure what I would have done if I would have heard the news before hand. The worst thing you can do is go by the words that cf is a fatal disease. Yes it is the truth. Every case of CF is different, but every year they make great strides to help fight this disease. You could have a healthy baby that could face things you would never imagine. Making a decision to teminate a pregancy is not an easy one, but look at it this way, if you decide to give this rocky road a test drive there will be happy moments. There is a little baby waiting to meet its family. My son has been pretty healthy, is a green belt in karate, swims, runs, and is very much like a regular little boy. Sometimes I look at him when he asleep and cry for him, but is it really for him, no for me, he doesnt feel differnt, he thinks we are all different. We hav had some set backs but nothing more then a family with a totally healthy baby. Good luck with any decision you make. You will always have this CF family.
PedsNP2007
New member
Hi,
I wanted to speak on behalf of someone with CF and someone who works in the pediatric ICU.
As a cf person, I am grateful for my parents having me (and my brother who had CF and my sister who has CF). I enjoy my life, for the most part. I have had to deal with my brother dying from CF post transplant... the worse part of my life so far... I worry constantly that my sister will start declining more. But all-in-all, living with CF has not been as horrible as it could have been.
As others have talked about, genotype and phenotype vary dramatically. Genotype is the gene identification (DF508 and DF508 are both genes my siblings and I have). Phenotype is what shows (symptoms of the disease process). Siblings with the same genotype may definitely have a completely unique disease course. That's seen in my family. I'm the healthiest of all 3 of us. My brother had a steadily decline over his lifetime that by age 18, his fev1 was 30%. His body compensated for so long prior to needing a transplant. My sister's fev1 I think is 40-50%. Mine is 60's. We've been in the hospital multiple times.
I tell my mom all the time, be grateful for the time you have with each of your children. It may not appear to you that you are lucky, but you are... you have seen 2 of your 3 children marry, you are going to have a first grandchild in 8 weeks, you have intelligent conversations with your children. You do not have to physically take care of us... one day you will, but it will be due to our physical status won't allow it... our mental capacities are with us.
Working in the ICU with kids, I've seen chronically ill children as well as previously healthy children. The saddest cases are the previously healthy kids who come in after a car crash (or fall out of a window or a shaken baby case or brain infection) and end up being neurologically devastated. Those families are left with a child who will never be that child they grew to love and know. Those families are left providing care for a child who will never "grow up," experience normal developmental milestones (progressing through school, going to college, having boy/girl-friends, getting married, having kids). It breaks my heart to see these families have to take home a child who has minimal (or no) interaction with the outside world, who require their families to provide 24/7 full cares.
So anything can happen to a "normal, healthy" kid. At least with CF, you are assured of the child having a normal neurological status (given there is no other associated issues). Do you want to miss out on those higher level interactions? I know myself that if my child would have a significant neurological impairment (known prenatally) that would be something *I* couldn't deal with and I may chose to terminate. I can deal with physical (non-neurological) problems. To not have communication with my child, that would sadden me. Yes, it would be sad to see my child physically suffering with CF issues (needing ivs for antibiotics, taking many meds), but my child and I would be interacting together.
You never know what will happen. Yes, you may get a child who has a rocky CF course or you may get a child who has up and down CF course. With the lifespan improving with tons of research taking place, now is the best time to have a CF child compared to 10-20-30 years ago. We know so much more than before.
I am definitely pro-choice as no one besides the parents should make the decision. However, I do not see how abortion for CF is something that should even be brought up by a doctor. I am not telling you what to do nor am judging you.
That's my own opinion. Sorry for the long posting.
Jenn
30 year old cf, cfrd, osteopenia, ped nurse practitioner in the ICU
I wanted to speak on behalf of someone with CF and someone who works in the pediatric ICU.
As a cf person, I am grateful for my parents having me (and my brother who had CF and my sister who has CF). I enjoy my life, for the most part. I have had to deal with my brother dying from CF post transplant... the worse part of my life so far... I worry constantly that my sister will start declining more. But all-in-all, living with CF has not been as horrible as it could have been.
As others have talked about, genotype and phenotype vary dramatically. Genotype is the gene identification (DF508 and DF508 are both genes my siblings and I have). Phenotype is what shows (symptoms of the disease process). Siblings with the same genotype may definitely have a completely unique disease course. That's seen in my family. I'm the healthiest of all 3 of us. My brother had a steadily decline over his lifetime that by age 18, his fev1 was 30%. His body compensated for so long prior to needing a transplant. My sister's fev1 I think is 40-50%. Mine is 60's. We've been in the hospital multiple times.
I tell my mom all the time, be grateful for the time you have with each of your children. It may not appear to you that you are lucky, but you are... you have seen 2 of your 3 children marry, you are going to have a first grandchild in 8 weeks, you have intelligent conversations with your children. You do not have to physically take care of us... one day you will, but it will be due to our physical status won't allow it... our mental capacities are with us.
Working in the ICU with kids, I've seen chronically ill children as well as previously healthy children. The saddest cases are the previously healthy kids who come in after a car crash (or fall out of a window or a shaken baby case or brain infection) and end up being neurologically devastated. Those families are left with a child who will never be that child they grew to love and know. Those families are left providing care for a child who will never "grow up," experience normal developmental milestones (progressing through school, going to college, having boy/girl-friends, getting married, having kids). It breaks my heart to see these families have to take home a child who has minimal (or no) interaction with the outside world, who require their families to provide 24/7 full cares.
So anything can happen to a "normal, healthy" kid. At least with CF, you are assured of the child having a normal neurological status (given there is no other associated issues). Do you want to miss out on those higher level interactions? I know myself that if my child would have a significant neurological impairment (known prenatally) that would be something *I* couldn't deal with and I may chose to terminate. I can deal with physical (non-neurological) problems. To not have communication with my child, that would sadden me. Yes, it would be sad to see my child physically suffering with CF issues (needing ivs for antibiotics, taking many meds), but my child and I would be interacting together.
You never know what will happen. Yes, you may get a child who has a rocky CF course or you may get a child who has up and down CF course. With the lifespan improving with tons of research taking place, now is the best time to have a CF child compared to 10-20-30 years ago. We know so much more than before.
I am definitely pro-choice as no one besides the parents should make the decision. However, I do not see how abortion for CF is something that should even be brought up by a doctor. I am not telling you what to do nor am judging you.
That's my own opinion. Sorry for the long posting.
Jenn
30 year old cf, cfrd, osteopenia, ped nurse practitioner in the ICU
PedsNP2007
New member
Hi,
I wanted to speak on behalf of someone with CF and someone who works in the pediatric ICU.
As a cf person, I am grateful for my parents having me (and my brother who had CF and my sister who has CF). I enjoy my life, for the most part. I have had to deal with my brother dying from CF post transplant... the worse part of my life so far... I worry constantly that my sister will start declining more. But all-in-all, living with CF has not been as horrible as it could have been.
As others have talked about, genotype and phenotype vary dramatically. Genotype is the gene identification (DF508 and DF508 are both genes my siblings and I have). Phenotype is what shows (symptoms of the disease process). Siblings with the same genotype may definitely have a completely unique disease course. That's seen in my family. I'm the healthiest of all 3 of us. My brother had a steadily decline over his lifetime that by age 18, his fev1 was 30%. His body compensated for so long prior to needing a transplant. My sister's fev1 I think is 40-50%. Mine is 60's. We've been in the hospital multiple times.
I tell my mom all the time, be grateful for the time you have with each of your children. It may not appear to you that you are lucky, but you are... you have seen 2 of your 3 children marry, you are going to have a first grandchild in 8 weeks, you have intelligent conversations with your children. You do not have to physically take care of us... one day you will, but it will be due to our physical status won't allow it... our mental capacities are with us.
Working in the ICU with kids, I've seen chronically ill children as well as previously healthy children. The saddest cases are the previously healthy kids who come in after a car crash (or fall out of a window or a shaken baby case or brain infection) and end up being neurologically devastated. Those families are left with a child who will never be that child they grew to love and know. Those families are left providing care for a child who will never "grow up," experience normal developmental milestones (progressing through school, going to college, having boy/girl-friends, getting married, having kids). It breaks my heart to see these families have to take home a child who has minimal (or no) interaction with the outside world, who require their families to provide 24/7 full cares.
So anything can happen to a "normal, healthy" kid. At least with CF, you are assured of the child having a normal neurological status (given there is no other associated issues). Do you want to miss out on those higher level interactions? I know myself that if my child would have a significant neurological impairment (known prenatally) that would be something *I* couldn't deal with and I may chose to terminate. I can deal with physical (non-neurological) problems. To not have communication with my child, that would sadden me. Yes, it would be sad to see my child physically suffering with CF issues (needing ivs for antibiotics, taking many meds), but my child and I would be interacting together.
You never know what will happen. Yes, you may get a child who has a rocky CF course or you may get a child who has up and down CF course. With the lifespan improving with tons of research taking place, now is the best time to have a CF child compared to 10-20-30 years ago. We know so much more than before.
I am definitely pro-choice as no one besides the parents should make the decision. However, I do not see how abortion for CF is something that should even be brought up by a doctor. I am not telling you what to do nor am judging you.
That's my own opinion. Sorry for the long posting.
Jenn
30 year old cf, cfrd, osteopenia, ped nurse practitioner in the ICU
I wanted to speak on behalf of someone with CF and someone who works in the pediatric ICU.
As a cf person, I am grateful for my parents having me (and my brother who had CF and my sister who has CF). I enjoy my life, for the most part. I have had to deal with my brother dying from CF post transplant... the worse part of my life so far... I worry constantly that my sister will start declining more. But all-in-all, living with CF has not been as horrible as it could have been.
As others have talked about, genotype and phenotype vary dramatically. Genotype is the gene identification (DF508 and DF508 are both genes my siblings and I have). Phenotype is what shows (symptoms of the disease process). Siblings with the same genotype may definitely have a completely unique disease course. That's seen in my family. I'm the healthiest of all 3 of us. My brother had a steadily decline over his lifetime that by age 18, his fev1 was 30%. His body compensated for so long prior to needing a transplant. My sister's fev1 I think is 40-50%. Mine is 60's. We've been in the hospital multiple times.
I tell my mom all the time, be grateful for the time you have with each of your children. It may not appear to you that you are lucky, but you are... you have seen 2 of your 3 children marry, you are going to have a first grandchild in 8 weeks, you have intelligent conversations with your children. You do not have to physically take care of us... one day you will, but it will be due to our physical status won't allow it... our mental capacities are with us.
Working in the ICU with kids, I've seen chronically ill children as well as previously healthy children. The saddest cases are the previously healthy kids who come in after a car crash (or fall out of a window or a shaken baby case or brain infection) and end up being neurologically devastated. Those families are left with a child who will never be that child they grew to love and know. Those families are left providing care for a child who will never "grow up," experience normal developmental milestones (progressing through school, going to college, having boy/girl-friends, getting married, having kids). It breaks my heart to see these families have to take home a child who has minimal (or no) interaction with the outside world, who require their families to provide 24/7 full cares.
So anything can happen to a "normal, healthy" kid. At least with CF, you are assured of the child having a normal neurological status (given there is no other associated issues). Do you want to miss out on those higher level interactions? I know myself that if my child would have a significant neurological impairment (known prenatally) that would be something *I* couldn't deal with and I may chose to terminate. I can deal with physical (non-neurological) problems. To not have communication with my child, that would sadden me. Yes, it would be sad to see my child physically suffering with CF issues (needing ivs for antibiotics, taking many meds), but my child and I would be interacting together.
You never know what will happen. Yes, you may get a child who has a rocky CF course or you may get a child who has up and down CF course. With the lifespan improving with tons of research taking place, now is the best time to have a CF child compared to 10-20-30 years ago. We know so much more than before.
I am definitely pro-choice as no one besides the parents should make the decision. However, I do not see how abortion for CF is something that should even be brought up by a doctor. I am not telling you what to do nor am judging you.
That's my own opinion. Sorry for the long posting.
Jenn
30 year old cf, cfrd, osteopenia, ped nurse practitioner in the ICU
PedsNP2007
New member
Hi,
I wanted to speak on behalf of someone with CF and someone who works in the pediatric ICU.
As a cf person, I am grateful for my parents having me (and my brother who had CF and my sister who has CF). I enjoy my life, for the most part. I have had to deal with my brother dying from CF post transplant... the worse part of my life so far... I worry constantly that my sister will start declining more. But all-in-all, living with CF has not been as horrible as it could have been.
As others have talked about, genotype and phenotype vary dramatically. Genotype is the gene identification (DF508 and DF508 are both genes my siblings and I have). Phenotype is what shows (symptoms of the disease process). Siblings with the same genotype may definitely have a completely unique disease course. That's seen in my family. I'm the healthiest of all 3 of us. My brother had a steadily decline over his lifetime that by age 18, his fev1 was 30%. His body compensated for so long prior to needing a transplant. My sister's fev1 I think is 40-50%. Mine is 60's. We've been in the hospital multiple times.
I tell my mom all the time, be grateful for the time you have with each of your children. It may not appear to you that you are lucky, but you are... you have seen 2 of your 3 children marry, you are going to have a first grandchild in 8 weeks, you have intelligent conversations with your children. You do not have to physically take care of us... one day you will, but it will be due to our physical status won't allow it... our mental capacities are with us.
Working in the ICU with kids, I've seen chronically ill children as well as previously healthy children. The saddest cases are the previously healthy kids who come in after a car crash (or fall out of a window or a shaken baby case or brain infection) and end up being neurologically devastated. Those families are left with a child who will never be that child they grew to love and know. Those families are left providing care for a child who will never "grow up," experience normal developmental milestones (progressing through school, going to college, having boy/girl-friends, getting married, having kids). It breaks my heart to see these families have to take home a child who has minimal (or no) interaction with the outside world, who require their families to provide 24/7 full cares.
So anything can happen to a "normal, healthy" kid. At least with CF, you are assured of the child having a normal neurological status (given there is no other associated issues). Do you want to miss out on those higher level interactions? I know myself that if my child would have a significant neurological impairment (known prenatally) that would be something *I* couldn't deal with and I may chose to terminate. I can deal with physical (non-neurological) problems. To not have communication with my child, that would sadden me. Yes, it would be sad to see my child physically suffering with CF issues (needing ivs for antibiotics, taking many meds), but my child and I would be interacting together.
You never know what will happen. Yes, you may get a child who has a rocky CF course or you may get a child who has up and down CF course. With the lifespan improving with tons of research taking place, now is the best time to have a CF child compared to 10-20-30 years ago. We know so much more than before.
I am definitely pro-choice as no one besides the parents should make the decision. However, I do not see how abortion for CF is something that should even be brought up by a doctor. I am not telling you what to do nor am judging you.
That's my own opinion. Sorry for the long posting.
Jenn
30 year old cf, cfrd, osteopenia, ped nurse practitioner in the ICU
I wanted to speak on behalf of someone with CF and someone who works in the pediatric ICU.
As a cf person, I am grateful for my parents having me (and my brother who had CF and my sister who has CF). I enjoy my life, for the most part. I have had to deal with my brother dying from CF post transplant... the worse part of my life so far... I worry constantly that my sister will start declining more. But all-in-all, living with CF has not been as horrible as it could have been.
As others have talked about, genotype and phenotype vary dramatically. Genotype is the gene identification (DF508 and DF508 are both genes my siblings and I have). Phenotype is what shows (symptoms of the disease process). Siblings with the same genotype may definitely have a completely unique disease course. That's seen in my family. I'm the healthiest of all 3 of us. My brother had a steadily decline over his lifetime that by age 18, his fev1 was 30%. His body compensated for so long prior to needing a transplant. My sister's fev1 I think is 40-50%. Mine is 60's. We've been in the hospital multiple times.
I tell my mom all the time, be grateful for the time you have with each of your children. It may not appear to you that you are lucky, but you are... you have seen 2 of your 3 children marry, you are going to have a first grandchild in 8 weeks, you have intelligent conversations with your children. You do not have to physically take care of us... one day you will, but it will be due to our physical status won't allow it... our mental capacities are with us.
Working in the ICU with kids, I've seen chronically ill children as well as previously healthy children. The saddest cases are the previously healthy kids who come in after a car crash (or fall out of a window or a shaken baby case or brain infection) and end up being neurologically devastated. Those families are left with a child who will never be that child they grew to love and know. Those families are left providing care for a child who will never "grow up," experience normal developmental milestones (progressing through school, going to college, having boy/girl-friends, getting married, having kids). It breaks my heart to see these families have to take home a child who has minimal (or no) interaction with the outside world, who require their families to provide 24/7 full cares.
So anything can happen to a "normal, healthy" kid. At least with CF, you are assured of the child having a normal neurological status (given there is no other associated issues). Do you want to miss out on those higher level interactions? I know myself that if my child would have a significant neurological impairment (known prenatally) that would be something *I* couldn't deal with and I may chose to terminate. I can deal with physical (non-neurological) problems. To not have communication with my child, that would sadden me. Yes, it would be sad to see my child physically suffering with CF issues (needing ivs for antibiotics, taking many meds), but my child and I would be interacting together.
You never know what will happen. Yes, you may get a child who has a rocky CF course or you may get a child who has up and down CF course. With the lifespan improving with tons of research taking place, now is the best time to have a CF child compared to 10-20-30 years ago. We know so much more than before.
I am definitely pro-choice as no one besides the parents should make the decision. However, I do not see how abortion for CF is something that should even be brought up by a doctor. I am not telling you what to do nor am judging you.
That's my own opinion. Sorry for the long posting.
Jenn
30 year old cf, cfrd, osteopenia, ped nurse practitioner in the ICU
PedsNP2007
New member
Hi,
I wanted to speak on behalf of someone with CF and someone who works in the pediatric ICU.
As a cf person, I am grateful for my parents having me (and my brother who had CF and my sister who has CF). I enjoy my life, for the most part. I have had to deal with my brother dying from CF post transplant... the worse part of my life so far... I worry constantly that my sister will start declining more. But all-in-all, living with CF has not been as horrible as it could have been.
As others have talked about, genotype and phenotype vary dramatically. Genotype is the gene identification (DF508 and DF508 are both genes my siblings and I have). Phenotype is what shows (symptoms of the disease process). Siblings with the same genotype may definitely have a completely unique disease course. That's seen in my family. I'm the healthiest of all 3 of us. My brother had a steadily decline over his lifetime that by age 18, his fev1 was 30%. His body compensated for so long prior to needing a transplant. My sister's fev1 I think is 40-50%. Mine is 60's. We've been in the hospital multiple times.
I tell my mom all the time, be grateful for the time you have with each of your children. It may not appear to you that you are lucky, but you are... you have seen 2 of your 3 children marry, you are going to have a first grandchild in 8 weeks, you have intelligent conversations with your children. You do not have to physically take care of us... one day you will, but it will be due to our physical status won't allow it... our mental capacities are with us.
Working in the ICU with kids, I've seen chronically ill children as well as previously healthy children. The saddest cases are the previously healthy kids who come in after a car crash (or fall out of a window or a shaken baby case or brain infection) and end up being neurologically devastated. Those families are left with a child who will never be that child they grew to love and know. Those families are left providing care for a child who will never "grow up," experience normal developmental milestones (progressing through school, going to college, having boy/girl-friends, getting married, having kids). It breaks my heart to see these families have to take home a child who has minimal (or no) interaction with the outside world, who require their families to provide 24/7 full cares.
So anything can happen to a "normal, healthy" kid. At least with CF, you are assured of the child having a normal neurological status (given there is no other associated issues). Do you want to miss out on those higher level interactions? I know myself that if my child would have a significant neurological impairment (known prenatally) that would be something *I* couldn't deal with and I may chose to terminate. I can deal with physical (non-neurological) problems. To not have communication with my child, that would sadden me. Yes, it would be sad to see my child physically suffering with CF issues (needing ivs for antibiotics, taking many meds), but my child and I would be interacting together.
You never know what will happen. Yes, you may get a child who has a rocky CF course or you may get a child who has up and down CF course. With the lifespan improving with tons of research taking place, now is the best time to have a CF child compared to 10-20-30 years ago. We know so much more than before.
I am definitely pro-choice as no one besides the parents should make the decision. However, I do not see how abortion for CF is something that should even be brought up by a doctor. I am not telling you what to do nor am judging you.
That's my own opinion. Sorry for the long posting.
Jenn
30 year old cf, cfrd, osteopenia, ped nurse practitioner in the ICU
I wanted to speak on behalf of someone with CF and someone who works in the pediatric ICU.
As a cf person, I am grateful for my parents having me (and my brother who had CF and my sister who has CF). I enjoy my life, for the most part. I have had to deal with my brother dying from CF post transplant... the worse part of my life so far... I worry constantly that my sister will start declining more. But all-in-all, living with CF has not been as horrible as it could have been.
As others have talked about, genotype and phenotype vary dramatically. Genotype is the gene identification (DF508 and DF508 are both genes my siblings and I have). Phenotype is what shows (symptoms of the disease process). Siblings with the same genotype may definitely have a completely unique disease course. That's seen in my family. I'm the healthiest of all 3 of us. My brother had a steadily decline over his lifetime that by age 18, his fev1 was 30%. His body compensated for so long prior to needing a transplant. My sister's fev1 I think is 40-50%. Mine is 60's. We've been in the hospital multiple times.
I tell my mom all the time, be grateful for the time you have with each of your children. It may not appear to you that you are lucky, but you are... you have seen 2 of your 3 children marry, you are going to have a first grandchild in 8 weeks, you have intelligent conversations with your children. You do not have to physically take care of us... one day you will, but it will be due to our physical status won't allow it... our mental capacities are with us.
Working in the ICU with kids, I've seen chronically ill children as well as previously healthy children. The saddest cases are the previously healthy kids who come in after a car crash (or fall out of a window or a shaken baby case or brain infection) and end up being neurologically devastated. Those families are left with a child who will never be that child they grew to love and know. Those families are left providing care for a child who will never "grow up," experience normal developmental milestones (progressing through school, going to college, having boy/girl-friends, getting married, having kids). It breaks my heart to see these families have to take home a child who has minimal (or no) interaction with the outside world, who require their families to provide 24/7 full cares.
So anything can happen to a "normal, healthy" kid. At least with CF, you are assured of the child having a normal neurological status (given there is no other associated issues). Do you want to miss out on those higher level interactions? I know myself that if my child would have a significant neurological impairment (known prenatally) that would be something *I* couldn't deal with and I may chose to terminate. I can deal with physical (non-neurological) problems. To not have communication with my child, that would sadden me. Yes, it would be sad to see my child physically suffering with CF issues (needing ivs for antibiotics, taking many meds), but my child and I would be interacting together.
You never know what will happen. Yes, you may get a child who has a rocky CF course or you may get a child who has up and down CF course. With the lifespan improving with tons of research taking place, now is the best time to have a CF child compared to 10-20-30 years ago. We know so much more than before.
I am definitely pro-choice as no one besides the parents should make the decision. However, I do not see how abortion for CF is something that should even be brought up by a doctor. I am not telling you what to do nor am judging you.
That's my own opinion. Sorry for the long posting.
Jenn
30 year old cf, cfrd, osteopenia, ped nurse practitioner in the ICU
PedsNP2007
New member
Hi,
<br />I wanted to speak on behalf of someone with CF and someone who works in the pediatric ICU.
<br />
<br />As a cf person, I am grateful for my parents having me (and my brother who had CF and my sister who has CF). I enjoy my life, for the most part. I have had to deal with my brother dying from CF post transplant... the worse part of my life so far... I worry constantly that my sister will start declining more. But all-in-all, living with CF has not been as horrible as it could have been.
<br />
<br />As others have talked about, genotype and phenotype vary dramatically. Genotype is the gene identification (DF508 and DF508 are both genes my siblings and I have). Phenotype is what shows (symptoms of the disease process). Siblings with the same genotype may definitely have a completely unique disease course. That's seen in my family. I'm the healthiest of all 3 of us. My brother had a steadily decline over his lifetime that by age 18, his fev1 was 30%. His body compensated for so long prior to needing a transplant. My sister's fev1 I think is 40-50%. Mine is 60's. We've been in the hospital multiple times.
<br />
<br />I tell my mom all the time, be grateful for the time you have with each of your children. It may not appear to you that you are lucky, but you are... you have seen 2 of your 3 children marry, you are going to have a first grandchild in 8 weeks, you have intelligent conversations with your children. You do not have to physically take care of us... one day you will, but it will be due to our physical status won't allow it... our mental capacities are with us.
<br />
<br />Working in the ICU with kids, I've seen chronically ill children as well as previously healthy children. The saddest cases are the previously healthy kids who come in after a car crash (or fall out of a window or a shaken baby case or brain infection) and end up being neurologically devastated. Those families are left with a child who will never be that child they grew to love and know. Those families are left providing care for a child who will never "grow up," experience normal developmental milestones (progressing through school, going to college, having boy/girl-friends, getting married, having kids). It breaks my heart to see these families have to take home a child who has minimal (or no) interaction with the outside world, who require their families to provide 24/7 full cares.
<br />
<br />So anything can happen to a "normal, healthy" kid. At least with CF, you are assured of the child having a normal neurological status (given there is no other associated issues). Do you want to miss out on those higher level interactions? I know myself that if my child would have a significant neurological impairment (known prenatally) that would be something *I* couldn't deal with and I may chose to terminate. I can deal with physical (non-neurological) problems. To not have communication with my child, that would sadden me. Yes, it would be sad to see my child physically suffering with CF issues (needing ivs for antibiotics, taking many meds), but my child and I would be interacting together.
<br />
<br />You never know what will happen. Yes, you may get a child who has a rocky CF course or you may get a child who has up and down CF course. With the lifespan improving with tons of research taking place, now is the best time to have a CF child compared to 10-20-30 years ago. We know so much more than before.
<br />
<br />I am definitely pro-choice as no one besides the parents should make the decision. However, I do not see how abortion for CF is something that should even be brought up by a doctor. I am not telling you what to do nor am judging you.
<br />
<br />That's my own opinion. Sorry for the long posting.
<br />
<br />Jenn
<br />30 year old cf, cfrd, osteopenia, ped nurse practitioner in the ICU
<br />I wanted to speak on behalf of someone with CF and someone who works in the pediatric ICU.
<br />
<br />As a cf person, I am grateful for my parents having me (and my brother who had CF and my sister who has CF). I enjoy my life, for the most part. I have had to deal with my brother dying from CF post transplant... the worse part of my life so far... I worry constantly that my sister will start declining more. But all-in-all, living with CF has not been as horrible as it could have been.
<br />
<br />As others have talked about, genotype and phenotype vary dramatically. Genotype is the gene identification (DF508 and DF508 are both genes my siblings and I have). Phenotype is what shows (symptoms of the disease process). Siblings with the same genotype may definitely have a completely unique disease course. That's seen in my family. I'm the healthiest of all 3 of us. My brother had a steadily decline over his lifetime that by age 18, his fev1 was 30%. His body compensated for so long prior to needing a transplant. My sister's fev1 I think is 40-50%. Mine is 60's. We've been in the hospital multiple times.
<br />
<br />I tell my mom all the time, be grateful for the time you have with each of your children. It may not appear to you that you are lucky, but you are... you have seen 2 of your 3 children marry, you are going to have a first grandchild in 8 weeks, you have intelligent conversations with your children. You do not have to physically take care of us... one day you will, but it will be due to our physical status won't allow it... our mental capacities are with us.
<br />
<br />Working in the ICU with kids, I've seen chronically ill children as well as previously healthy children. The saddest cases are the previously healthy kids who come in after a car crash (or fall out of a window or a shaken baby case or brain infection) and end up being neurologically devastated. Those families are left with a child who will never be that child they grew to love and know. Those families are left providing care for a child who will never "grow up," experience normal developmental milestones (progressing through school, going to college, having boy/girl-friends, getting married, having kids). It breaks my heart to see these families have to take home a child who has minimal (or no) interaction with the outside world, who require their families to provide 24/7 full cares.
<br />
<br />So anything can happen to a "normal, healthy" kid. At least with CF, you are assured of the child having a normal neurological status (given there is no other associated issues). Do you want to miss out on those higher level interactions? I know myself that if my child would have a significant neurological impairment (known prenatally) that would be something *I* couldn't deal with and I may chose to terminate. I can deal with physical (non-neurological) problems. To not have communication with my child, that would sadden me. Yes, it would be sad to see my child physically suffering with CF issues (needing ivs for antibiotics, taking many meds), but my child and I would be interacting together.
<br />
<br />You never know what will happen. Yes, you may get a child who has a rocky CF course or you may get a child who has up and down CF course. With the lifespan improving with tons of research taking place, now is the best time to have a CF child compared to 10-20-30 years ago. We know so much more than before.
<br />
<br />I am definitely pro-choice as no one besides the parents should make the decision. However, I do not see how abortion for CF is something that should even be brought up by a doctor. I am not telling you what to do nor am judging you.
<br />
<br />That's my own opinion. Sorry for the long posting.
<br />
<br />Jenn
<br />30 year old cf, cfrd, osteopenia, ped nurse practitioner in the ICU
JennyCoulon
New member
I was just reading this and thought that she should have had baby by now if she chose to keep it. If you are here please update all of us on things are now.
JennyCoulon
New member
I was just reading this and thought that she should have had baby by now if she chose to keep it. If you are here please update all of us on things are now.
JennyCoulon
New member
I was just reading this and thought that she should have had baby by now if she chose to keep it. If you are here please update all of us on things are now.
JennyCoulon
New member
I was just reading this and thought that she should have had baby by now if she chose to keep it. If you are here please update all of us on things are now.
JennyCoulon
New member
I was just reading this and thought that she should have had baby by now if she chose to keep it. If you are here please update all of us on things are now.