Carriers Having Babies

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alabamamom

New member
i've read about that- can you give some details? On one hand, i kind of feel like not emplanting the "bad" embreos is almost like an abortion. of course on the other hand, if I could prevent having a very sick child...
<br />i'm very on the fence on that issue. what is the cost?
 
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NancyLKF

New member
I have also agonized over this since Maggie, my first, was diagnosed at birth. I went to therapy. I did a lot of soul-searching. I knew I couldn't do IVF for personal reasons and couldn't emotionally handle picking which embryo was worth keeping and which wasn't. So it was adopt or have another baby naturally. And before I could come to a decision... I found out I was pregnant. So, decision was made. We are having our second baby in December and I'm scared of her having CF. We skipped the testing because of the risk of miscarriage. But, after all is said and done... this child is a gift and will be well loved. It is, as everyone says, a very personal decision and hopefully no one will give you a hard time. So far, the only person who hasn't been happy for us is my MIL. So I pray for no CF everyday and hope for the best while planning for a second child with CF.
Hope this helps a little. Best of luck to you.
 
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NancyLKF

New member
I have also agonized over this since Maggie, my first, was diagnosed at birth. I went to therapy. I did a lot of soul-searching. I knew I couldn't do IVF for personal reasons and couldn't emotionally handle picking which embryo was worth keeping and which wasn't. So it was adopt or have another baby naturally. And before I could come to a decision... I found out I was pregnant. So, decision was made. We are having our second baby in December and I'm scared of her having CF. We skipped the testing because of the risk of miscarriage. But, after all is said and done... this child is a gift and will be well loved. It is, as everyone says, a very personal decision and hopefully no one will give you a hard time. So far, the only person who hasn't been happy for us is my MIL. So I pray for no CF everyday and hope for the best while planning for a second child with CF.
Hope this helps a little. Best of luck to you.
 
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NancyLKF

New member
I have also agonized over this since Maggie, my first, was diagnosed at birth. I went to therapy. I did a lot of soul-searching. I knew I couldn't do IVF for personal reasons and couldn't emotionally handle picking which embryo was worth keeping and which wasn't. So it was adopt or have another baby naturally. And before I could come to a decision... I found out I was pregnant. So, decision was made. We are having our second baby in December and I'm scared of her having CF. We skipped the testing because of the risk of miscarriage. But, after all is said and done... this child is a gift and will be well loved. It is, as everyone says, a very personal decision and hopefully no one will give you a hard time. So far, the only person who hasn't been happy for us is my MIL. So I pray for no CF everyday and hope for the best while planning for a second child with CF.
<br />Hope this helps a little. Best of luck to you.
 
C

cf4life

New member
Another point to not overlook when you already have another cfer in the house, is cross contamination. You are not going to keep the siblings apart and the younger cfer is probably going to get the older cfers bugs and probably at a younger age. What happens if one of them gets a bad bug like cepecia, what would you do then, knowing that child could give it to the other child? How heart broken would you be then?
 
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cf4life

New member
Another point to not overlook when you already have another cfer in the house, is cross contamination. You are not going to keep the siblings apart and the younger cfer is probably going to get the older cfers bugs and probably at a younger age. What happens if one of them gets a bad bug like cepecia, what would you do then, knowing that child could give it to the other child? How heart broken would you be then?
 
C

cf4life

New member
Another point to not overlook when you already have another cfer in the house, is cross contamination. You are not going to keep the siblings apart and the younger cfer is probably going to get the older cfers bugs and probably at a younger age. What happens if one of them gets a bad bug like cepecia, what would you do then, knowing that child could give it to the other child? How heart broken would you be then?
 
M

mneville

Guest
Thousands of women are doing IVF everyday and picking the 'best embryo', the one that is growing the best in the dish. PGD is not all that different. I never felt like it was an abortion but again, that is a personal decision. I almost 'wish' I would get pregnant naturally by accident but I find it kinda irresponsible from my end. When a women is pregnant, there are 100 things we do or don't do to have a healthy baby. It's practically against the law to drink/smoke or do anything that 'may' harm your unborn child. So why on Earth would I take all those precautions yet throw the biggest risk factor to the wind? A 25% chance that my baby will have a fatal disease and face expensive, painful procedures every day because I wanted another baby?

Aidan is our world and we also felt the best way to keep him healthy was to avoid the cross-contamination issue as well. I have heard of older siblings who can't be together because of the bacteria issues. CF is SOOOO expensive too, I don't want to saddle another child with these ever increasing costs of medical care. And I certainly don't want the govt to take over their care if they can't afford it.

PGD is not that expensive ($2,750) and IVF cycles which are separate and alot of insurance companies are paying for it. It is a way to prevent CF and maybe one day eradicate it forever. The God I believe in certainly doesn't fault me for trying to bring a healthy baby into this world. Having said that, both of our sons ,CF/No CF, are gifts no matter how they were brought into this world and we wouldn't change a thing.

Megan
 
M

mneville

Guest
Thousands of women are doing IVF everyday and picking the 'best embryo', the one that is growing the best in the dish. PGD is not all that different. I never felt like it was an abortion but again, that is a personal decision. I almost 'wish' I would get pregnant naturally by accident but I find it kinda irresponsible from my end. When a women is pregnant, there are 100 things we do or don't do to have a healthy baby. It's practically against the law to drink/smoke or do anything that 'may' harm your unborn child. So why on Earth would I take all those precautions yet throw the biggest risk factor to the wind? A 25% chance that my baby will have a fatal disease and face expensive, painful procedures every day because I wanted another baby?

Aidan is our world and we also felt the best way to keep him healthy was to avoid the cross-contamination issue as well. I have heard of older siblings who can't be together because of the bacteria issues. CF is SOOOO expensive too, I don't want to saddle another child with these ever increasing costs of medical care. And I certainly don't want the govt to take over their care if they can't afford it.

PGD is not that expensive ($2,750) and IVF cycles which are separate and alot of insurance companies are paying for it. It is a way to prevent CF and maybe one day eradicate it forever. The God I believe in certainly doesn't fault me for trying to bring a healthy baby into this world. Having said that, both of our sons ,CF/No CF, are gifts no matter how they were brought into this world and we wouldn't change a thing.

Megan
 
M

mneville

Guest
Thousands of women are doing IVF everyday and picking the 'best embryo', the one that is growing the best in the dish. PGD is not all that different. I never felt like it was an abortion but again, that is a personal decision. I almost 'wish' I would get pregnant naturally by accident but I find it kinda irresponsible from my end. When a women is pregnant, there are 100 things we do or don't do to have a healthy baby. It's practically against the law to drink/smoke or do anything that 'may' harm your unborn child. So why on Earth would I take all those precautions yet throw the biggest risk factor to the wind? A 25% chance that my baby will have a fatal disease and face expensive, painful procedures every day because I wanted another baby?
<br />
<br />Aidan is our world and we also felt the best way to keep him healthy was to avoid the cross-contamination issue as well. I have heard of older siblings who can't be together because of the bacteria issues. CF is SOOOO expensive too, I don't want to saddle another child with these ever increasing costs of medical care. And I certainly don't want the govt to take over their care if they can't afford it.
<br />
<br />PGD is not that expensive ($2,750) and IVF cycles which are separate and alot of insurance companies are paying for it. It is a way to prevent CF and maybe one day eradicate it forever. The God I believe in certainly doesn't fault me for trying to bring a healthy baby into this world. Having said that, both of our sons ,CF/No CF, are gifts no matter how they were brought into this world and we wouldn't change a thing.
<br />
<br />Megan
 
S

SARAHSARAH253

New member
Just had to say we were just right where you were last summer NANCYLFK. I'll say a prayer for you tonight and your babies.

It was so tough being pregnant and not knowing what was coming next. All the what ifs plus all the normal pregnancy hormones running through your body.

Our son was born with CF, and that was a huge surprise. When we became pregnant with my daughter I knew it would be are last baby. I thought if the baby does have CF we will have are hands full and if the baby doesn't have CF we will still have our hands full. I had my tubes tied after having our daughter. I will always have a small whispering ache. I wanted a tribe of monsters! Back to my daughter we did not test her while she was inside of me, and chose to watch her through high level ultrasounds. We had a scare they thought they saw something but they were wrong. She was born and tested. Two long weeks later we got the Ambry results that she didn't have CF.

I think this has to be the most tough and painful decision anyone can be forced to make. There is no way anyone can really understand until there forced to be in our shoes. It's not something any of us could of ever imagined that we have to be forced to deal with. Just thought I had to say something. I sympathies for any couple facing this decision.

Love,

Sarah

Mommy to Johnny 3 w/cf and Bailey Elizabeth 10 months no cf
 
S

SARAHSARAH253

New member
Just had to say we were just right where you were last summer NANCYLFK. I'll say a prayer for you tonight and your babies.

It was so tough being pregnant and not knowing what was coming next. All the what ifs plus all the normal pregnancy hormones running through your body.

Our son was born with CF, and that was a huge surprise. When we became pregnant with my daughter I knew it would be are last baby. I thought if the baby does have CF we will have are hands full and if the baby doesn't have CF we will still have our hands full. I had my tubes tied after having our daughter. I will always have a small whispering ache. I wanted a tribe of monsters! Back to my daughter we did not test her while she was inside of me, and chose to watch her through high level ultrasounds. We had a scare they thought they saw something but they were wrong. She was born and tested. Two long weeks later we got the Ambry results that she didn't have CF.

I think this has to be the most tough and painful decision anyone can be forced to make. There is no way anyone can really understand until there forced to be in our shoes. It's not something any of us could of ever imagined that we have to be forced to deal with. Just thought I had to say something. I sympathies for any couple facing this decision.

Love,

Sarah

Mommy to Johnny 3 w/cf and Bailey Elizabeth 10 months no cf
 
S

SARAHSARAH253

New member
Just had to say we were just right where you were last summer NANCYLFK. I'll say a prayer for you tonight and your babies.
<br />
<br />It was so tough being pregnant and not knowing what was coming next. All the what ifs plus all the normal pregnancy hormones running through your body.
<br />
<br />Our son was born with CF, and that was a huge surprise. When we became pregnant with my daughter I knew it would be are last baby. I thought if the baby does have CF we will have are hands full and if the baby doesn't have CF we will still have our hands full. I had my tubes tied after having our daughter. I will always have a small whispering ache. I wanted a tribe of monsters! Back to my daughter we did not test her while she was inside of me, and chose to watch her through high level ultrasounds. We had a scare they thought they saw something but they were wrong. She was born and tested. Two long weeks later we got the Ambry results that she didn't have CF.
<br />
<br />I think this has to be the most tough and painful decision anyone can be forced to make. There is no way anyone can really understand until there forced to be in our shoes. It's not something any of us could of ever imagined that we have to be forced to deal with. Just thought I had to say something. I sympathies for any couple facing this decision.
<br />
<br />Love,
<br />
<br />Sarah
<br />
<br />Mommy to Johnny 3 w/cf and Bailey Elizabeth 10 months no cf
 
K

kalebsmommy

New member
I, as the many others here, very much wanted lots of kids. We had no idea we were both carriers until they diagnosed our son. We did a lot of soul searching, talking to Kaleb's cf team about having another child and just decided we didn't want to take the risk. My main reason was remembering Kaleb hooked up to every machine possible and not knowing if he would live or not....I don't ever want to put another child or us through that again. I also think Kaleb needs all of our attention and efforts spent on him and his care. I agree with everyone else, that it's a very personal decision and I think the answer can be different for each of us....Talking to Kaleb's cf team really helped a lot, they gave us information to read and the percentages..and told us of other families that have went on to have more children that are healthy but also families that have 3 kids all with cf. They made it very real and were very supportive.
 
K

kalebsmommy

New member
I, as the many others here, very much wanted lots of kids. We had no idea we were both carriers until they diagnosed our son. We did a lot of soul searching, talking to Kaleb's cf team about having another child and just decided we didn't want to take the risk. My main reason was remembering Kaleb hooked up to every machine possible and not knowing if he would live or not....I don't ever want to put another child or us through that again. I also think Kaleb needs all of our attention and efforts spent on him and his care. I agree with everyone else, that it's a very personal decision and I think the answer can be different for each of us....Talking to Kaleb's cf team really helped a lot, they gave us information to read and the percentages..and told us of other families that have went on to have more children that are healthy but also families that have 3 kids all with cf. They made it very real and were very supportive.
 
K

kalebsmommy

New member
I, as the many others here, very much wanted lots of kids. We had no idea we were both carriers until they diagnosed our son. We did a lot of soul searching, talking to Kaleb's cf team about having another child and just decided we didn't want to take the risk. My main reason was remembering Kaleb hooked up to every machine possible and not knowing if he would live or not....I don't ever want to put another child or us through that again. I also think Kaleb needs all of our attention and efforts spent on him and his care. I agree with everyone else, that it's a very personal decision and I think the answer can be different for each of us....Talking to Kaleb's cf team really helped a lot, they gave us information to read and the percentages..and told us of other families that have went on to have more children that are healthy but also families that have 3 kids all with cf. They made it very real and were very supportive.
 
A

alabamamom

New member
Nancy, I was almost in your shoes too. I got pregnant again when my daughter was a year old, but miscarried- that was before I had undergone my testing and found out I was a carrier. Now I have an IUD- Paraguard, but like one of you said, I kind of wish I was one of the 1 % who have an oops baby with it! Growing up, my older sister had CF, so I know way too much about it, what the kids go through, etc. But then I think, yeah but my sister was born in 1976- medicine now is so much better. When she was diagnosed at around 4, dr.s thought she wouldn't make it to grade school, but she lived to 29. kids born now will have it so much better,that i'm sure of. <img src="i/expressions/face-icon-small-smile.gif" border="0">
BTW, you all have very cute kids!
 
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