I don't know if this really helps answer your question, but i'd just like to share my experience. maybe it helps maybe not. I'm not one to judge anyone on their decisions to do this, just so were clear. I'm young (23), Catholic, and married and my wife and I are both carriers I have DF508 and my wife has W1283X. We had been married a year and were ready to have our first child. My sister is 21 and has CF and she has had a really rough year with about 20 hospitalizations for various reasons(Pancreatitis 4 or 5 times, lung infections, injurys from having poor calcium and Vit D.) We were very scared of how hard my sisters illness has been on her and on my parents watching helplessly, just trying to be there for her and help her have the best life she can have.
We heard about PGD and were very excited for what it could mean for us, to have a guarantee that our child would not be affected. Its truly amazing that technology can do something like that. We knew we were carriers and we knew that every child we had would be like rolling dice and 1:4 chance our child could have CF. We went in for a consultation and learned about the process and were very impressed. We thought about it for a while and we had many moral dilemas. There were so many things that bothered me about the situation. (I'm not saying that I judge anyone for choosing because I think the idea is great, but what is good for one person may not be acceptable to someone else. We all have our own set of values and definitions on whats right and wrong.) In the beginning I was excited about the idea, then I was worried about how we would pay for it, We found that it would cost about $25,000 a cycle. As a newly married couple with tons of college tuition to pay off the cost was a huge problem. We had insurance, but it didnt look like it was going to cover much if any of the process. We started saving money as we thought about whether we'd do it or not. As we continued the consultations at the clinic I felt weird and out of place. I was a young healthy man and my wife was young and healthy, I always felt ashamed and embarrased that I was going to a fertility clinic, I wish that they separated PGD from fertility. As they told us about the process they explained what would be done and how they would take eggs out of my wife and sperm from me and then they would have about enough material to create 8 children. They would then combine them in a lab under a microscope. After 3 days in the lab the cells would have developed to the point that they can extract and analyze the DNA. They could tell which ones had CF which ones were carriers, and which ones were clear of mutations. they would "reduce" (was their term for inject a poison to kill those embryos) the CF affected embryos and and they would take 2-4 healthy embryos to use in implantation. Any additional healthy embryos would be Frozen cryogenically for us to use later if we choose to. The implantation would involve my wife coming into the clinic and having the embryos placed into her uterus in hopes that at least one would attach and begin her pregnancy.
my issues: I didnt like the idea of killing the CF embryos. (people argue about this definition, but please dont start bickering about this because I dont want to hear it I think its a very personal choice that shouldnt be judged) To me those embryos would be my children, they are my sperm and my wifes egg together in a living organism. I never want to cause a child to suffer from CF, but I couldnt live with the idea of killing my children. I thought it over and over again that, what makes those children less deserving of life than another? If my parents knew my sister would have cf would they had rathered she not ever exist. Of course not. They love her and cherish every day they have her in their lives despite her illness. I couldnt do it.
I hated the idea of my children being created in a lab and not in my wife. I hated that conception would be under a microscope and not a moment that my wife and I experience together and remember for our whole lives.
But then my sister got sicker. I was really scared for her and I thought again. How can i live with myself if i have a child that has to go through life affected by CF knowing that I could have done something to prevent it?
I started to think about it some more and I think I worked myself up to accept the idea and do it.
then I went to a Mass at the national shrine of the immaculate conception. There was a Mass for the walk for life rally in washington DC. it was heavily Prolife biased and I've always been sort of put off by extremism (on both prolife/choice) being a catholic I always sort of leaned to the prolife side, but I dont always agree with everything they say. Something was said about the moment of life beginning when the sperm and egg come together and I thought of that lab and my children beginning life there. They then went on to pray that people stop sinning by doign IVF. at that moment I was like HOLD ON, WHAT! I was furious so many things went through my mind. I was thinking how dare they judge me for that! they dont have any idea what its like to be in our situation. they havent grown up accustomed to hearing their sister in the next room hacking and wheezing and fighting for air as her lungs fill with mucous, they havent been there at the side of the hospital bed, or looking through the window of an isolation ward. They really have no idea. And I don't have CF I dont even have any idea.
but later as I thought about it I came back to the thought of the affected embryos and the fate of the frozen embryos, and how someone else would be putting my children into my wife and not me. It still bothered me alot. I talked with preists, my parents, my sister. And after all that trouble and being torn back and forth both ways, My wife and I talked about it, and we just couldnt do it.
PGD was not for me. I wanted it to be so badly, but I couldnt do it. About 2 months later we found out my wife was pregnant the normal way. We were scared, but still happy with the choice we made. My baby is 4 months old this week. She is beautiful and seems very healthy so far. My sister is in the hospital today in surgery. I am so scared to find out if my baby has CF or not. We tried to have a sweat test done when she was 2 months old, but they did not collect enough sweat to get a result. We decided to try again when she is older. I'm scared to find out, the topic has oddly not come up with us since then. I'm almost avoiding talking about it because I'm afraid of the answer. I know that I need to find out soon so we can be ready and so we can get her all the care she needs if she has it. I want more kids, but i'm afraid of having to roll the dice again...
We heard about PGD and were very excited for what it could mean for us, to have a guarantee that our child would not be affected. Its truly amazing that technology can do something like that. We knew we were carriers and we knew that every child we had would be like rolling dice and 1:4 chance our child could have CF. We went in for a consultation and learned about the process and were very impressed. We thought about it for a while and we had many moral dilemas. There were so many things that bothered me about the situation. (I'm not saying that I judge anyone for choosing because I think the idea is great, but what is good for one person may not be acceptable to someone else. We all have our own set of values and definitions on whats right and wrong.) In the beginning I was excited about the idea, then I was worried about how we would pay for it, We found that it would cost about $25,000 a cycle. As a newly married couple with tons of college tuition to pay off the cost was a huge problem. We had insurance, but it didnt look like it was going to cover much if any of the process. We started saving money as we thought about whether we'd do it or not. As we continued the consultations at the clinic I felt weird and out of place. I was a young healthy man and my wife was young and healthy, I always felt ashamed and embarrased that I was going to a fertility clinic, I wish that they separated PGD from fertility. As they told us about the process they explained what would be done and how they would take eggs out of my wife and sperm from me and then they would have about enough material to create 8 children. They would then combine them in a lab under a microscope. After 3 days in the lab the cells would have developed to the point that they can extract and analyze the DNA. They could tell which ones had CF which ones were carriers, and which ones were clear of mutations. they would "reduce" (was their term for inject a poison to kill those embryos) the CF affected embryos and and they would take 2-4 healthy embryos to use in implantation. Any additional healthy embryos would be Frozen cryogenically for us to use later if we choose to. The implantation would involve my wife coming into the clinic and having the embryos placed into her uterus in hopes that at least one would attach and begin her pregnancy.
my issues: I didnt like the idea of killing the CF embryos. (people argue about this definition, but please dont start bickering about this because I dont want to hear it I think its a very personal choice that shouldnt be judged) To me those embryos would be my children, they are my sperm and my wifes egg together in a living organism. I never want to cause a child to suffer from CF, but I couldnt live with the idea of killing my children. I thought it over and over again that, what makes those children less deserving of life than another? If my parents knew my sister would have cf would they had rathered she not ever exist. Of course not. They love her and cherish every day they have her in their lives despite her illness. I couldnt do it.
I hated the idea of my children being created in a lab and not in my wife. I hated that conception would be under a microscope and not a moment that my wife and I experience together and remember for our whole lives.
But then my sister got sicker. I was really scared for her and I thought again. How can i live with myself if i have a child that has to go through life affected by CF knowing that I could have done something to prevent it?
I started to think about it some more and I think I worked myself up to accept the idea and do it.
then I went to a Mass at the national shrine of the immaculate conception. There was a Mass for the walk for life rally in washington DC. it was heavily Prolife biased and I've always been sort of put off by extremism (on both prolife/choice) being a catholic I always sort of leaned to the prolife side, but I dont always agree with everything they say. Something was said about the moment of life beginning when the sperm and egg come together and I thought of that lab and my children beginning life there. They then went on to pray that people stop sinning by doign IVF. at that moment I was like HOLD ON, WHAT! I was furious so many things went through my mind. I was thinking how dare they judge me for that! they dont have any idea what its like to be in our situation. they havent grown up accustomed to hearing their sister in the next room hacking and wheezing and fighting for air as her lungs fill with mucous, they havent been there at the side of the hospital bed, or looking through the window of an isolation ward. They really have no idea. And I don't have CF I dont even have any idea.
but later as I thought about it I came back to the thought of the affected embryos and the fate of the frozen embryos, and how someone else would be putting my children into my wife and not me. It still bothered me alot. I talked with preists, my parents, my sister. And after all that trouble and being torn back and forth both ways, My wife and I talked about it, and we just couldnt do it.
PGD was not for me. I wanted it to be so badly, but I couldnt do it. About 2 months later we found out my wife was pregnant the normal way. We were scared, but still happy with the choice we made. My baby is 4 months old this week. She is beautiful and seems very healthy so far. My sister is in the hospital today in surgery. I am so scared to find out if my baby has CF or not. We tried to have a sweat test done when she was 2 months old, but they did not collect enough sweat to get a result. We decided to try again when she is older. I'm scared to find out, the topic has oddly not come up with us since then. I'm almost avoiding talking about it because I'm afraid of the answer. I know that I need to find out soon so we can be ready and so we can get her all the care she needs if she has it. I want more kids, but i'm afraid of having to roll the dice again...