So I am wanting children and my husband is not all that thrilled due to him having cf and i am a carrier. My concerns are about the chances that we have on having a cf child. He just found out about the vx770 and the 809. I am a carrier of df508 and he is g553x. Not sure how that will help if we did have a child with cystic fibrosis. Any ideas on what to look into????
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Wanting Children
- Thread starter shortie30
- Start date
So I am wanting children and my husband is not all that thrilled due to him having cf and i am a carrier. My concerns are about the chances that we have on having a cf child. He just found out about the vx770 and the 809. I am a carrier of df508 and he is g553x. Not sure how that will help if we did have a child with cystic fibrosis. Any ideas on what to look into????
So I am wanting children and my husband is not all that thrilled due to him having cf and i am a carrier. My concerns are about the chances that we have on having a cf child. He just found out about the vx770 and the 809. I am a carrier of df508 and he is g553x. Not sure how that will help if we did have a child with cystic fibrosis. Any ideas on what to look into????
If he has CF and you are a carrier, then you have a 50% chance of having a child with CF and a 50% chance that the child will be a carrier. No chance that your child would not at least be a carrier.VX 809 is aimed to the DF508 mutation. VX 770 is aimed at the G551D population (in short terms). I am in no way trying to discourage you from having a child. Just do not count on Vertex to be the answer. While promising and moving along very well, these drugs could fail at any moment during the process. Good luck to you both <img src="i/expressions/heart.gif" border="0">
If he has CF and you are a carrier, then you have a 50% chance of having a child with CF and a 50% chance that the child will be a carrier. No chance that your child would not at least be a carrier.VX 809 is aimed to the DF508 mutation. VX 770 is aimed at the G551D population (in short terms). I am in no way trying to discourage you from having a child. Just do not count on Vertex to be the answer. While promising and moving along very well, these drugs could fail at any moment during the process. Good luck to you both <img src="i/expressions/heart.gif" border="0">
If he has CF and you are a carrier, then you have a 50% chance of having a child with CF and a 50% chance that the child will be a carrier. No chance that your child would not at least be a carrier.VX 809 is aimed to the DF508 mutation. VX 770 is aimed at the G551D population (in short terms). I am in no way trying to discourage you from having a child. Just do not count on Vertex to be the answer. While promising and moving along very well, these drugs could fail at any moment during the process. Good luck to you both <img src="i/expressions/heart.gif" border="0">
Knowing that you are carrier gives the child a 50% chance of having cf. PGD could POSSIBLY eliminate this chance. Although there is at least one person on this board that did PGD and still had a cf baby.
Your husband may have multiple reasons why he isn't so sure about conceiving. One, he may worry he won't be around to care for you and the child. How high is his lung function? What has the course of his cf been like? Two, he may not ethically feel that taking a 50/50 chance of creating a cfer is the kindest thing to do to a child. Of course, none of us (to my knowledge) have ever reported regretting being born but many have reported that they felt there parents were irresponsible in birthing add'l children after the diagnosis in a prior child.
Another 2 options all together are IVF with donor sperm. This way you still get to be pregnant and birth the baby and the other is adoption.
It will be at least 1.5 years until your husband can get VX770 and probably a little longer for the combo with 809. Additionally, his doctor will have to probably write the rx for an off label use since he doesn't have G551D or DF508.
I think a good first step is for you both to have a frank talk with his doctor. Do you already accompany him to his appointments?
Your husband may have multiple reasons why he isn't so sure about conceiving. One, he may worry he won't be around to care for you and the child. How high is his lung function? What has the course of his cf been like? Two, he may not ethically feel that taking a 50/50 chance of creating a cfer is the kindest thing to do to a child. Of course, none of us (to my knowledge) have ever reported regretting being born but many have reported that they felt there parents were irresponsible in birthing add'l children after the diagnosis in a prior child.
Another 2 options all together are IVF with donor sperm. This way you still get to be pregnant and birth the baby and the other is adoption.
It will be at least 1.5 years until your husband can get VX770 and probably a little longer for the combo with 809. Additionally, his doctor will have to probably write the rx for an off label use since he doesn't have G551D or DF508.
I think a good first step is for you both to have a frank talk with his doctor. Do you already accompany him to his appointments?
Knowing that you are carrier gives the child a 50% chance of having cf. PGD could POSSIBLY eliminate this chance. Although there is at least one person on this board that did PGD and still had a cf baby.
Your husband may have multiple reasons why he isn't so sure about conceiving. One, he may worry he won't be around to care for you and the child. How high is his lung function? What has the course of his cf been like? Two, he may not ethically feel that taking a 50/50 chance of creating a cfer is the kindest thing to do to a child. Of course, none of us (to my knowledge) have ever reported regretting being born but many have reported that they felt there parents were irresponsible in birthing add'l children after the diagnosis in a prior child.
Another 2 options all together are IVF with donor sperm. This way you still get to be pregnant and birth the baby and the other is adoption.
It will be at least 1.5 years until your husband can get VX770 and probably a little longer for the combo with 809. Additionally, his doctor will have to probably write the rx for an off label use since he doesn't have G551D or DF508.
I think a good first step is for you both to have a frank talk with his doctor. Do you already accompany him to his appointments?
Your husband may have multiple reasons why he isn't so sure about conceiving. One, he may worry he won't be around to care for you and the child. How high is his lung function? What has the course of his cf been like? Two, he may not ethically feel that taking a 50/50 chance of creating a cfer is the kindest thing to do to a child. Of course, none of us (to my knowledge) have ever reported regretting being born but many have reported that they felt there parents were irresponsible in birthing add'l children after the diagnosis in a prior child.
Another 2 options all together are IVF with donor sperm. This way you still get to be pregnant and birth the baby and the other is adoption.
It will be at least 1.5 years until your husband can get VX770 and probably a little longer for the combo with 809. Additionally, his doctor will have to probably write the rx for an off label use since he doesn't have G551D or DF508.
I think a good first step is for you both to have a frank talk with his doctor. Do you already accompany him to his appointments?
Knowing that you are carrier gives the child a 50% chance of having cf. PGD could POSSIBLY eliminate this chance. Although there is at least one person on this board that did PGD and still had a cf baby.
<br />
<br />Your husband may have multiple reasons why he isn't so sure about conceiving. One, he may worry he won't be around to care for you and the child. How high is his lung function? What has the course of his cf been like? Two, he may not ethically feel that taking a 50/50 chance of creating a cfer is the kindest thing to do to a child. Of course, none of us (to my knowledge) have ever reported regretting being born but many have reported that they felt there parents were irresponsible in birthing add'l children after the diagnosis in a prior child.
<br />
<br />Another 2 options all together are IVF with donor sperm. This way you still get to be pregnant and birth the baby and the other is adoption.
<br />
<br />It will be at least 1.5 years until your husband can get VX770 and probably a little longer for the combo with 809. Additionally, his doctor will have to probably write the rx for an off label use since he doesn't have G551D or DF508.
<br />
<br />I think a good first step is for you both to have a frank talk with his doctor. Do you already accompany him to his appointments?
<br />
<br />Your husband may have multiple reasons why he isn't so sure about conceiving. One, he may worry he won't be around to care for you and the child. How high is his lung function? What has the course of his cf been like? Two, he may not ethically feel that taking a 50/50 chance of creating a cfer is the kindest thing to do to a child. Of course, none of us (to my knowledge) have ever reported regretting being born but many have reported that they felt there parents were irresponsible in birthing add'l children after the diagnosis in a prior child.
<br />
<br />Another 2 options all together are IVF with donor sperm. This way you still get to be pregnant and birth the baby and the other is adoption.
<br />
<br />It will be at least 1.5 years until your husband can get VX770 and probably a little longer for the combo with 809. Additionally, his doctor will have to probably write the rx for an off label use since he doesn't have G551D or DF508.
<br />
<br />I think a good first step is for you both to have a frank talk with his doctor. Do you already accompany him to his appointments?
crickit715
New member
unfortunatley, i have to agree...i would never have knowingly conceived a child with cystic fibrosis. i love my daughter more than anything in this world, but when i see the struggles she goes thru it breaks my heart. i know this is an extremely touchy subject for which many people have different solutions/opinions. i personally know a couple in my town in the same situation as you who went thru a fertility specialist and had the fertilized egg implanted and were guarenteed the baby would only be a carrier. (i dont know the specific details of the procedure, nor do i necessarily agree with the concept, but it is what it is now that it is done) but, i believe i am on the far conservative side of this question, i know that if i had one child with cf i would not take the 25% chance of having another just to satisfy MY need for children. good luck in your decision, it will be a tough one for sure! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Proxy</b></i>
Maybe I am just being ignorant but I dont understand why you would want to have a child if youd be passing on the gene or having a child with cf.
Good luck in whatever you choose</end quote></div>
Maybe I am just being ignorant but I dont understand why you would want to have a child if youd be passing on the gene or having a child with cf.
Good luck in whatever you choose</end quote></div>
crickit715
New member
unfortunatley, i have to agree...i would never have knowingly conceived a child with cystic fibrosis. i love my daughter more than anything in this world, but when i see the struggles she goes thru it breaks my heart. i know this is an extremely touchy subject for which many people have different solutions/opinions. i personally know a couple in my town in the same situation as you who went thru a fertility specialist and had the fertilized egg implanted and were guarenteed the baby would only be a carrier. (i dont know the specific details of the procedure, nor do i necessarily agree with the concept, but it is what it is now that it is done) but, i believe i am on the far conservative side of this question, i know that if i had one child with cf i would not take the 25% chance of having another just to satisfy MY need for children. good luck in your decision, it will be a tough one for sure! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Proxy</b></i>
Maybe I am just being ignorant but I dont understand why you would want to have a child if youd be passing on the gene or having a child with cf.
Good luck in whatever you choose</end quote>
Maybe I am just being ignorant but I dont understand why you would want to have a child if youd be passing on the gene or having a child with cf.
Good luck in whatever you choose</end quote>
crickit715
New member
unfortunatley, i have to agree...i would never have knowingly conceived a child with cystic fibrosis. i love my daughter more than anything in this world, but when i see the struggles she goes thru it breaks my heart. i know this is an extremely touchy subject for which many people have different solutions/opinions. i personally know a couple in my town in the same situation as you who went thru a fertility specialist and had the fertilized egg implanted and were guarenteed the baby would only be a carrier. (i dont know the specific details of the procedure, nor do i necessarily agree with the concept, but it is what it is now that it is done) but, i believe i am on the far conservative side of this question, i know that if i had one child with cf i would not take the 25% chance of having another just to satisfy MY need for children. good luck in your decision, it will be a tough one for sure! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Proxy</b></i>
<br />
<br />Maybe I am just being ignorant but I dont understand why you would want to have a child if youd be passing on the gene or having a child with cf.
<br />
<br />Good luck in whatever you choose</end quote>
<br />
<br />Maybe I am just being ignorant but I dont understand why you would want to have a child if youd be passing on the gene or having a child with cf.
<br />
<br />Good luck in whatever you choose</end quote>
His cf announces it self in a mild version. He just got out of the hospital which is the first time in 7 years. his fev1 was 60 when he went in and now it is at 69. Then same as it has been for the last 6 years. He had a rough year this year. Several Colds, brocken ribs from snowmobiling and then a grinder accident to the mouth. All this had caused him to go down. But doing much better. There have never been many upsets of late but when he was younger he had a bleeding ulcer that was miss diagnosed and then was life flighted for treatment. I was all for the donor but he had been struggling since it would not be his child. I am all for PGD, if it helps. Just after hearing about the vx770 and 809 he was thinking that if it does work then if our child did have cf then this drug would make it easier. I am still not so sure that this is what will make it easier. Any Ideas?
His cf announces it self in a mild version. He just got out of the hospital which is the first time in 7 years. his fev1 was 60 when he went in and now it is at 69. Then same as it has been for the last 6 years. He had a rough year this year. Several Colds, brocken ribs from snowmobiling and then a grinder accident to the mouth. All this had caused him to go down. But doing much better. There have never been many upsets of late but when he was younger he had a bleeding ulcer that was miss diagnosed and then was life flighted for treatment. I was all for the donor but he had been struggling since it would not be his child. I am all for PGD, if it helps. Just after hearing about the vx770 and 809 he was thinking that if it does work then if our child did have cf then this drug would make it easier. I am still not so sure that this is what will make it easier. Any Ideas?
His cf announces it self in a mild version. He just got out of the hospital which is the first time in 7 years. his fev1 was 60 when he went in and now it is at 69. Then same as it has been for the last 6 years. He had a rough year this year. Several Colds, brocken ribs from snowmobiling and then a grinder accident to the mouth. All this had caused him to go down. But doing much better. There have never been many upsets of late but when he was younger he had a bleeding ulcer that was miss diagnosed and then was life flighted for treatment. I was all for the donor but he had been struggling since it would not be his child. I am all for PGD, if it helps. Just after hearing about the vx770 and 809 he was thinking that if it does work then if our child did have cf then this drug would make it easier. I am still not so sure that this is what will make it easier. Any Ideas?
MESA or Non surgical sperm aspiration with a UROLOGIST who specializes in male infertility.
IVF with PGD. PGD is not 100% effective though, there are human and lab errors, but it is currently the best method of preventing the passing of of the CF mutation
Because he has CF and you are a carrier, you might try to preauth IVF with PGD through your insurance co. I would start now with gathering some evidence on the YEARLY cost of an average CF patient. I would then explain to them that you are asking for them to cover this IVF with PGD to avoid bringing another CF child into the world, and to lower costs for the insurance company. I've heard of people getting their IVF and/or PGD covered for this reason. It takes some work and usually at least one appeal of them denying your request. but it can be well worth it if they are going to cover it all, or even most of it!
IVF with PGD. PGD is not 100% effective though, there are human and lab errors, but it is currently the best method of preventing the passing of of the CF mutation
Because he has CF and you are a carrier, you might try to preauth IVF with PGD through your insurance co. I would start now with gathering some evidence on the YEARLY cost of an average CF patient. I would then explain to them that you are asking for them to cover this IVF with PGD to avoid bringing another CF child into the world, and to lower costs for the insurance company. I've heard of people getting their IVF and/or PGD covered for this reason. It takes some work and usually at least one appeal of them denying your request. but it can be well worth it if they are going to cover it all, or even most of it!
MESA or Non surgical sperm aspiration with a UROLOGIST who specializes in male infertility.
IVF with PGD. PGD is not 100% effective though, there are human and lab errors, but it is currently the best method of preventing the passing of of the CF mutation
Because he has CF and you are a carrier, you might try to preauth IVF with PGD through your insurance co. I would start now with gathering some evidence on the YEARLY cost of an average CF patient. I would then explain to them that you are asking for them to cover this IVF with PGD to avoid bringing another CF child into the world, and to lower costs for the insurance company. I've heard of people getting their IVF and/or PGD covered for this reason. It takes some work and usually at least one appeal of them denying your request. but it can be well worth it if they are going to cover it all, or even most of it!
IVF with PGD. PGD is not 100% effective though, there are human and lab errors, but it is currently the best method of preventing the passing of of the CF mutation
Because he has CF and you are a carrier, you might try to preauth IVF with PGD through your insurance co. I would start now with gathering some evidence on the YEARLY cost of an average CF patient. I would then explain to them that you are asking for them to cover this IVF with PGD to avoid bringing another CF child into the world, and to lower costs for the insurance company. I've heard of people getting their IVF and/or PGD covered for this reason. It takes some work and usually at least one appeal of them denying your request. but it can be well worth it if they are going to cover it all, or even most of it!