CF Mom's I need your advice please

L

lexi0408

Guest
<P>So my husband and I are blessed with a baby boy. He's healthy and happy-Thankfully. The problem in lies with #2. We want to have a second child but we're both carriers for CF (different mutations) which as you know leaves us with a 25% chance of having a CF positive baby.  I know you wouldn't change your children but I'm asking if anyone had or will have IVF/PGD or IVF/CGH done with their next baby? IF so how did you come to that decision? My husband and I are nervous about having number 2 because of the CF risk. We're concerned with the personal struggle of our children both our son and future son or daughter should they be CF positive.  It's also the financial strain on us as parents and the emotional strain on everyone.  We've both ruled out adoption for #2 (if there's a #3 maybe) it's just we want to have another one before we make decisions to adopt. any insight or advice would be greatly appreicated I'm just trying to learn as much as I can before we decide to try naturally or use science and technology to our benefit.thank you all in advance! </P>
 
L

lexi0408

Guest
<P>So my husband and I are blessed with a baby boy. He's healthy and happy-Thankfully. The problem in lies with #2. We want to havea second child but we're both carriers for CF (different mutations) which as you know leaves us with a 25% chance of having a CF positive baby. I know you wouldn't change your children but I'm asking if anyone had or will have IVF/PGD or IVF/CGH done with their next baby? IF so how did you come to that decision? My husband and I are nervous about having number 2 because of the CF risk. We'reconcerned withthe personal struggle of our children both our son and future son or daughter should they be CF positive. It's also the financial strain on us as parents and the emotional strain on everyone. We've both ruled out adoption for #2 (if there's a #3 maybe) it's just we want to have another one before we make decisions to adopt.any insight or advice would be greatly appreicated I'm just trying to learn as much as I can before we decideto try naturally or use science and technology to ourbenefit.thank you all in advance!</P>
 
L

lexi0408

Guest
<P>So my husband and I are blessed with a baby boy. He's healthy and happy-Thankfully. The problem in lies with #2. We want to havea second child but we're both carriers for CF (different mutations) which as you know leaves us with a 25% chance of having a CF positive baby. I know you wouldn't change your children but I'm asking if anyone had or will have IVF/PGD or IVF/CGH done with their next baby? IF so how did you come to that decision? <BR><BR>My husband and I are nervous about having number 2 because of the CF risk. We'reconcerned withthe personal struggle of our children both our son and future son or daughter should they be CF positive. It's also the financial strain on us as parents and the emotional strain on everyone. We've both ruled out adoption for #2 (if there's a #3 maybe) it's just we want to have another one before we make decisions to adopt.<BR><BR><BR>any insight or advice would be greatly appreicated I'm just trying to learn as much as I can before we decideto try naturally or use science and technology to ourbenefit.<BR><BR>thank you all in advance!</P>
 
C

CJPsMom

New member
We're in the same boat, but if we choose to have another child, it will be through natural means. It really comes down to what you are comfortable with. We believe that life begins at the very beginning, so we couldn't imagine having PGD, then destroying it if we weren't happy with the results.

I completely understand all the feelings you're having. We didn't know we were CF carriers until I was pregnant and our little one has CF. He's 9 months old today and I wouldn't trade him for anything.

While my story isn't everyone's story, he had emergency surgery less than 48 hrs after birth due to complications associated with CF, was in the NICU for 27 days, home for 4 weeks, back in the hospital for a week. He's had eating problems, was Failure to Thrive and now has a feeding tube (another 2 days in the hospital). Now we're meeting with an occupational therapist because he won't take anything orally. Fortunately, so far, he's been mostly digestive (a huge piece of CF that I had NO idea about until dx).

So, you have to make a personal decision and it's good that you're seeking input because it is definitely a life-changing diagnosis for your immediate family, those around you and your little one. The positive is that there's a tremendous amount of research being done now and LO's today with CF are in a much better position from the medical perspective that at any time before, but it's still a nasty disease.
 
C

CJPsMom

New member
We're in the same boat, but if we choose to have another child, it will be through natural means. It really comes down to what you are comfortable with. We believe that life begins at the very beginning, so we couldn't imagine having PGD, then destroying it if we weren't happy with the results.

I completely understand all the feelings you're having. We didn't know we were CF carriers until I was pregnant and our little one has CF. He's 9 months old today and I wouldn't trade him for anything.

While my story isn't everyone's story, he had emergency surgery less than 48 hrs after birth due to complications associated with CF, was in the NICU for 27 days, home for 4 weeks, back in the hospital for a week. He's had eating problems, was Failure to Thrive and now has a feeding tube (another 2 days in the hospital). Now we're meeting with an occupational therapist because he won't take anything orally. Fortunately, so far, he's been mostly digestive (a huge piece of CF that I had NO idea about until dx).

So, you have to make a personal decision and it's good that you're seeking input because it is definitely a life-changing diagnosis for your immediate family, those around you and your little one. The positive is that there's a tremendous amount of research being done now and LO's today with CF are in a much better position from the medical perspective that at any time before, but it's still a nasty disease.
 
C

CJPsMom

New member
We're in the same boat, but if we choose to have another child, it will be through natural means. It really comes down to what you are comfortable with. We believe that life begins at the very beginning, so we couldn't imagine having PGD, then destroying it if we weren't happy with the results.
<br />
<br />I completely understand all the feelings you're having. We didn't know we were CF carriers until I was pregnant and our little one has CF. He's 9 months old today and I wouldn't trade him for anything.
<br />
<br />While my story isn't everyone's story, he had emergency surgery less than 48 hrs after birth due to complications associated with CF, was in the NICU for 27 days, home for 4 weeks, back in the hospital for a week. He's had eating problems, was Failure to Thrive and now has a feeding tube (another 2 days in the hospital). Now we're meeting with an occupational therapist because he won't take anything orally. Fortunately, so far, he's been mostly digestive (a huge piece of CF that I had NO idea about until dx).
<br />
<br />So, you have to make a personal decision and it's good that you're seeking input because it is definitely a life-changing diagnosis for your immediate family, those around you and your little one. The positive is that there's a tremendous amount of research being done now and LO's today with CF are in a much better position from the medical perspective that at any time before, but it's still a nasty disease.
<br />
<br />
 
M

mneville

Guest
Lexi....Love this question and love to share our story. Aidan was diagnosed at birth as a Double Delta. We had NO idea we were carriers until his diagnosis. His first year he was healthy as a horse. But we knew as we sat in that doctor's office during his diagnosis that we would never take the chance of giving this to another child. We are Catholic, loving people who embrace and value every life that is here BUT knowledge is power. We raise tons of money each year for the CFF for a cure. Why would I then take the chance to give it to more children? Women today don't smoke, drink or even eat tuna for the small chance of something happening to their child. Why would I do all that but then throw out the huge genetic factor of giving my child a horrid disease? It makes no sense to me whatsoever.

Once the child is here, I would never fault any decisions but this is BEFORE a child is even created and we can create healthy children which is amazing to me! SOOOO...we did. We did IVF/PGD (cheaper than adoption for us) and had a healthy baby boy who is now 4. We just underwent another round of IVF and created two embryos who are both healthy! So now we will try for a successful pregnancy. In all our rounds of IVF, we never had to destroy a CF embryo. Some people have to make difficult decisions but things worked out well for us so far.

CF is brutal. Even in 2011, my child suffers immensely from it. Is it the worst thing in the world? No, but I certainly wouldn't want to keep passing it down. Financially, emotionally and for the sake of the CF child's health, this was the best decision for us. IVF/PGD process feels like a walk in the park compared to caring for a child each day with CF. Please contact me for any information. We used Genesis Genetics who pioneered PGD for CF cases and works with IVF clinics throughout the US. Best of luck!
Megan
 
M

mneville

Guest
Lexi....Love this question and love to share our story. Aidan was diagnosed at birth as a Double Delta. We had NO idea we were carriers until his diagnosis. His first year he was healthy as a horse. But we knew as we sat in that doctor's office during his diagnosis that we would never take the chance of giving this to another child. We are Catholic, loving people who embrace and value every life that is here BUT knowledge is power. We raise tons of money each year for the CFF for a cure. Why would I then take the chance to give it to more children? Women today don't smoke, drink or even eat tuna for the small chance of something happening to their child. Why would I do all that but then throw out the huge genetic factor of giving my child a horrid disease? It makes no sense to me whatsoever.

Once the child is here, I would never fault any decisions but this is BEFORE a child is even created and we can create healthy children which is amazing to me! SOOOO...we did. We did IVF/PGD (cheaper than adoption for us) and had a healthy baby boy who is now 4. We just underwent another round of IVF and created two embryos who are both healthy! So now we will try for a successful pregnancy. In all our rounds of IVF, we never had to destroy a CF embryo. Some people have to make difficult decisions but things worked out well for us so far.

CF is brutal. Even in 2011, my child suffers immensely from it. Is it the worst thing in the world? No, but I certainly wouldn't want to keep passing it down. Financially, emotionally and for the sake of the CF child's health, this was the best decision for us. IVF/PGD process feels like a walk in the park compared to caring for a child each day with CF. Please contact me for any information. We used Genesis Genetics who pioneered PGD for CF cases and works with IVF clinics throughout the US. Best of luck!
Megan
 
M

mneville

Guest
Lexi....Love this question and love to share our story. Aidan was diagnosed at birth as a Double Delta. We had NO idea we were carriers until his diagnosis. His first year he was healthy as a horse. But we knew as we sat in that doctor's office during his diagnosis that we would never take the chance of giving this to another child. We are Catholic, loving people who embrace and value every life that is here BUT knowledge is power. We raise tons of money each year for the CFF for a cure. Why would I then take the chance to give it to more children? Women today don't smoke, drink or even eat tuna for the small chance of something happening to their child. Why would I do all that but then throw out the huge genetic factor of giving my child a horrid disease? It makes no sense to me whatsoever.
<br />
<br />Once the child is here, I would never fault any decisions but this is BEFORE a child is even created and we can create healthy children which is amazing to me! SOOOO...we did. We did IVF/PGD (cheaper than adoption for us) and had a healthy baby boy who is now 4. We just underwent another round of IVF and created two embryos who are both healthy! So now we will try for a successful pregnancy. In all our rounds of IVF, we never had to destroy a CF embryo. Some people have to make difficult decisions but things worked out well for us so far.
<br />
<br />CF is brutal. Even in 2011, my child suffers immensely from it. Is it the worst thing in the world? No, but I certainly wouldn't want to keep passing it down. Financially, emotionally and for the sake of the CF child's health, this was the best decision for us. IVF/PGD process feels like a walk in the park compared to caring for a child each day with CF. Please contact me for any information. We used Genesis Genetics who pioneered PGD for CF cases and works with IVF clinics throughout the US. Best of luck!
<br />Megan
 
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