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RE: The odds of passing on a disease - 9/30/2008 10:39:12 AM
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Sideways
Posts: 3629
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quote:
ORIGINAL: lexie
I just want to use the example of CF. I volunteer at a local CF organization. Our biggest fundraiser is a woman who is in her 30's with very little complications of the disease. There are so many gains being made these days in terms of managing the disease. I've heard so many stories of kids living in to adulthood.
At what point then do we decide that life is long enough to be worth bringing into this world? Yes, there is a chance that your child may die at a young age but there are the same odds that your child will live well into adulthood, marry and have children.
Well, now that's a fair point. A couple might decide to conceive if the disease was manageable, even though the odds were high that the child would die before the 30th birthday. It's a tough call.
And I'm not putting down Sandy or Maggie for their beliefs. I respect both ladies greatly. I hope they know that. I just thought it was a difficult question that would make an interesting discussion.
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RE: The odds of passing on a disease - 9/30/2008 10:40:50 AM
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Mrs.Wifey
Posts: 5097
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From: The Gorgeous plains of Colorado
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quote:
I wonder if any of us can really say for certain what we would do without being faced with such a choice.
We can definitely say for certain, but we are faced with children with a terminal illness everyday. We have already seen their older brothers die at the ages of 19 and 22, there is no way we would do that to any child. We see the degeneration of their bodies, the need for nursing care to aid them in bathing and toileting, their lack of ability to raise their hands much higher then a couple inches off their lap, etc... Micah's younger brother can no longer lift a plate, eventually he will no longer be able to feed himself.
No way I could knowingly do that to any child.
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RE: The odds of passing on a disease - 9/30/2008 10:57:52 AM
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OneOfHisJewels
Posts: 2549
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From: California
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quote:
ORIGINAL: 3cappuccinosmom
quote:
If you did have a child with a severe disability or deformity, who requires lots and lots of surgeries and hospitalizations, would you still continue to not use birth control? And if you then had 2 children with diseases or disabilities, would you still continue to use not birth control whatsoever?
Well, I hope we never are in that situation, and I know it would be very tough.
But...we believe God is in control. So, he's in control whether he gives us healthy children, or children with challenges. For us it's not about genetics but about who's in control and who should be in control. 
So, is that answer, that, yes, you would still not use birth control? That wasn't quite clear, although I think it was. I actually do have more respect for you if the answer is yes, in spite of my own views of what I said I would do for MYSELF in this thread. But if after a difficult situation, you would still hold to QF beliefs, that actually is more consistent.
quote:
Well, I hope we never are in that situation, and I know it would be very tough.
My parents "hoped" they would never be in that situation, either, but they still found themselves plunged into it. Everyone hopes they will never be in that situation, but some are. There are no guarantees.
quote:
I just want to use the example of CF. I volunteer at a local CF organization. Our biggest fundraiser is a woman who is in her 30's with very little complications of the disease. There are so many gains being made these days in terms of managing the disease. I've heard so many stories of kids living in to adulthood.
That's a good point, Lexie. I was thinking about this last night. While I do think it is important to be careful, I do think it is important not to think that any life is "worthless." And, even as we eradicate some diseases, new ones develop. I do believe that one reason God gives some people physical problems is to teach the rest of us compassion. I don't think we can genetically engineer a perfect race. The very thought creeps me out.
< Message edited by OneOfHisJewels -- 9/30/2008 11:06:06 AM >
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"We basically use what I have seen referred to as "get off your butt" parenting. It employs more interaction, more redirection, more prevention, and usually less spanking."
-Mrs. Wifey
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RE: The odds of passing on a disease - 9/30/2008 11:19:10 AM
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Mrs.X
Posts: 2933
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From: Newberg, OR
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quote:
ORIGINAL: lexie
I just want to use the example of CF. I volunteer at a local CF organization. Our biggest fundraiser is a woman who is in her 30's with very little complications of the disease. There are so many gains being made these days in terms of managing the disease. I've heard so many stories of kids living in to adulthood.
Wow, I didn't people with CF could live that long. I think Robert's brother was 19 when he died in 1992.
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-Stina
From Sweet Grass to the Packin' House
A soft answer turneth away wrath: but grievous words stir up anger. -Proverbs 15:1
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RE: The odds of passing on a disease - 9/30/2008 11:23:27 AM
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OneOfHisJewels
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Christina, the average life span for CF (statistically) is now 30, much better than the age of around 8 that is was in the early 70's, and the age of about 2 that it was in the 40's and 50's and before. So, 30, is a great improvement, but still a relatively young age to die. There is a lot of research going into that disease, so I think the life span will get longer and longer, and someday, there may even be a cure.
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"We basically use what I have seen referred to as "get off your butt" parenting. It employs more interaction, more redirection, more prevention, and usually less spanking."
-Mrs. Wifey
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RE: The odds of passing on a disease - 9/30/2008 12:35:33 PM
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OneOfHisJewels
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I am actually glad to hear that..that implies you are QF for the right reasons rather than the wrong ones (i.e. you are not QF so you can line up your 7 healthy children, and say look at us, look at our well behaved, healthy, perfect kids).
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"We basically use what I have seen referred to as "get off your butt" parenting. It employs more interaction, more redirection, more prevention, and usually less spanking."
-Mrs. Wifey
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RE: The odds of passing on a disease - 9/30/2008 1:50:41 PM
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Sideways
Posts: 3629
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Would it affect your decision to marry someone, if somehow you knew ahead of time that any children you had together would stand a high chance of contracting a terminal illness? Let's assume that you have not yet made any commitment to this person, but you considering them as a potential marriage partner.
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RE: The odds of passing on a disease - 9/30/2008 1:59:58 PM
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OneOfHisJewels
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Who are you addressing the question to? If you are asking me, I would still marry the person, because, like I said, I don't think I'm even going to try for biological kids at this point. In the past, I would also probably still have married the person, and the decision not to try for biological would have simply come sooner. After all, marriage isn't all about the kids!  It is also about 2 people loving each other and wanting to spend the rest of their lives together.
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"We basically use what I have seen referred to as "get off your butt" parenting. It employs more interaction, more redirection, more prevention, and usually less spanking."
-Mrs. Wifey
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RE: The odds of passing on a disease - 9/30/2008 2:06:17 PM
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Sideways
Posts: 3629
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Oh, it's a hypothetical for anybody. Yeah, I know a lot of us are already married, but put yourself back in time 10 years (or whatever).
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RE: The odds of passing on a disease - 9/30/2008 2:28:26 PM
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Mrs.Wifey
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We would have still gotten married, but we married with the idea that I might not ever get pregnant and that we were fine with adopting. Gabby is a blessing, and not something we have ever taken for granted.
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RE: The odds of passing on a disease - 9/30/2008 4:35:41 PM
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OneOfHisJewels
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quote:
Gabby is a blessing, and not something we have ever taken for granted.
I would say she is someone, not something you don't take for granted.  I think the "something" you don't take for granted is the fact that you did, in fact, conceive. Sorry I hope I'm not sounding too picky, but I don't like to hear children referred to as its or things. And I know you love her dearly, and see her as a child and not a thing...I'm just sayin.'....when I look at that darling little girl in the avatar, I just can't think of her as a thing, lol.
< Message edited by OneOfHisJewels -- 9/30/2008 4:59:26 PM >
_____________________________
"We basically use what I have seen referred to as "get off your butt" parenting. It employs more interaction, more redirection, more prevention, and usually less spanking."
-Mrs. Wifey
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RE: The odds of passing on a disease - 9/30/2008 7:12:38 PM
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shadowspring
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I was tested for HIV before I even considered getting pregnant, because in the years before I became a Christian I was possibly exposed.
My dh and I talked about it before marrying, and he did not want me to get tested then. He said he would love me and care for me no matter what came.
But we did use birth control until we felt ready to have children, and then I insisted on getting tested before trying to get pregnant. It would be very cruel in my eyes to conceive a child knowing they could contract or be born with a fatal illness.
So all genetic and other testing necessary, we would do before getting pregnant. Then, depending on the news, we would pray about it and probably talk to my godly in-laws, discuss it together and come to a decision.
MD is a very frustrating, debilitating illness, and if I knew I was a carrier, I would not conceive children. It is an X chromosome issue, so women are carriers and all men born with the X chromosome issue will die. I don't want to contribute to that problem either way.
CF would be a different issue. I would want to talk to my friend who is a respiratory therapist and get her opinion, as well as our family doctor.
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"Blessed is the man...whose delight is in the law of the Lord, and in His law meditates day and night. He will be like a tree planted by rivers of water..." from Psalm 1
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RE: The odds of passing on a disease - 9/30/2008 7:35:46 PM
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Mrs.Wifey
Posts: 5097
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From: The Gorgeous plains of Colorado
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quote:
MD is a very frustrating, debilitating illness, and if I knew I was a carrier, I would not conceive children. It is an X chromosome issue, so women are carriers and all men born with the X chromosome issue will die. I don't want to contribute to that problem either way.
To be accurate, not ALL men will have it, and not all women will be carriers. It depends on the type of MD. I have one SIL who is not a carrier, and one BIL who does not have Duchenne's. They have one nephew who does have MD, and one who does not.
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RE: The odds of passing on a disease - 10/1/2008 1:21:51 AM
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karlie
Posts: 16952
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From: Central California
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quote:
I wonder if any of us can really say for certain what we would do without being faced with such a choice.
I wonder that too. Our family lived the nightmare, and I can tell you being faced with it is a much, much different story than merely imaging it. It doesn't even come close to the reality of watching a child you love suffer for years then die. Willingly choosing to conceive another child knowing they have a good chance of facing the same fate takes on a whole new meaning and level of thinking once you've been there.
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All I have needed, Thy hand hath provided...great is Thy faithfulness, Lord unto me.
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RE: The odds of passing on a disease - 10/1/2008 1:25:50 PM
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shadowspring
Posts: 1635
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quote:
ORIGINAL: Mrs.Wifey
quote:
MD is a very frustrating, debilitating illness, and if I knew I was a carrier, I would not conceive children. It is an X chromosome issue, so women are carriers and all men born with the X chromosome issue will die. I don't want to contribute to that problem either way.
To be accurate, not ALL men will have it, and not all women will be carriers. It depends on the type of MD. I have one SIL who is not a carrier, and one BIL who does not have Duchenne's. They have one nephew who does have MD, and one who does not.
Well, that is what my husband's cousin's wife told me. Their son died of MD and their daughter is a carrier. When the mom found out, she had her tubes tied. Her daughter does not plan to have children.
_____________________________
"Blessed is the man...whose delight is in the law of the Lord, and in His law meditates day and night. He will be like a tree planted by rivers of water..." from Psalm 1
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RE: The odds of passing on a disease - 10/1/2008 2:14:24 PM
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Mrs.Wifey
Posts: 5097
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From: The Gorgeous plains of Colorado
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quote:
ORIGINAL: shadowspring
quote:
ORIGINAL: Mrs.Wifey
quote:
MD is a very frustrating, debilitating illness, and if I knew I was a carrier, I would not conceive children. It is an X chromosome issue, so women are carriers and all men born with the X chromosome issue will die. I don't want to contribute to that problem either way.
To be accurate, not ALL men will have it, and not all women will be carriers. It depends on the type of MD. I have one SIL who is not a carrier, and one BIL who does not have Duchenne's. They have one nephew who does have MD, and one who does not.
Well, that is what my husband's cousin's wife told me. Their son died of MD and their daughter is a carrier. When the mom found out, she had her tubes tied. Her daughter does not plan to have children.
The daughter really should find out for sure if she is a carrier. I know with my husbands siblings, they were able to locate the "blip" so to speak in their DNA sequencing which in turn allowed them to determine whether or not SIL is a carrier(which she isn't). If you want more info for you cousin then let me know, I can get you the name of the lab and scientist that did for my IL's. I know with my IL's, their "blip" is not in the normal place so it took awhile for them to isolate it...
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RE: The odds of passing on a disease - 10/1/2008 2:25:49 PM
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Room2Grow
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I would still have kids. We faced this before we started having kids b/c I went for the "get ready to have kids" appointment and of course, lots of screening tests were recommended. Seemed fine at the time (now I would have refused)- I came up positive for the CF carrier gene. No problem, just get hubby tested and as long as he doesn't carry, no problem. He tested positive. Now we both had to get further testing done to see if we had the same one (some CF affects lungs, others the digestive system, so it's also possible for two carriers to have no chance of a CF baby and also possible to not even pass on the carrier gene to the kids). Mine came back as one of the forms that affects the lungs...his came back...nonexistent. Now, either the first lab made a mistake, or he was healed (they tested and retested him three times)- either way, we spent weeks/months agonizing about why we knew this information, what did it mean, I always knew I was supposed to be a mother... We finally decided to trust God and forge ahead, but there was much soul searching and agonizing...
*For me* it made me realize that it is really up to God. Who am I to say no? A little girl at our church had CF and she was a happy, reasonably healthy 7 year old girl (edit- I say was b/c we no longer go there, she is still healthy and thriving). My daughter's best friend has spina bifida- she is sweet and huggy and fun- also only about 6 months behind cognitively. I hope for healthy children, and so far, mine have been relatively healthy. Just because they come down with "X" disease- it can be mild, maybe it can be treated, and it can also be healed. We will only have four children of our own, because that's just all my body can take, but when and how they arrive is up to God.
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Jesus knows me, this I love.
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RE: The odds of passing on a disease - 10/1/2008 4:43:37 PM
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shadowspring
Posts: 1635
Joined: 5/27/2006
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quote:
ORIGINAL: Mrs.Wifey
quote:
ORIGINAL: shadowspring
quote:
ORIGINAL: Mrs.Wifey
quote:
MD is a very frustrating, debilitating illness, and if I knew I was a carrier, I would not conceive children. It is an X chromosome issue, so women are carriers and all men born with the X chromosome issue will die. I don't want to contribute to that problem either way.
To be accurate, not ALL men will have it, and not all women will be carriers. It depends on the type of MD. I have one SIL who is not a carrier, and one BIL who does not have Duchenne's. They have one nephew who does have MD, and one who does not.
Well, that is what my husband's cousin's wife told me. Their son died of MD and their daughter is a carrier. When the mom found out, she had her tubes tied. Her daughter does not plan to have children.
The daughter really should find out for sure if she is a carrier. I know with my husbands siblings, they were able to locate the "blip" so to speak in their DNA sequencing which in turn allowed them to determine whether or not SIL is a carrier(which she isn't). If you want more info for you cousin then let me know, I can get you the name of the lab and scientist that did for my IL's. I know with my IL's, their "blip" is not in the normal place so it took awhile for them to isolate it...
Thanks, that is a sweet offer,  but they spoke as if they already KNEW, and as you know the doctors treating their son were a big part of their lives during those years. I am assuming she has already had genetic testing done.
I don't really want to bring it up. It's a painful subject. 
_____________________________
"Blessed is the man...whose delight is in the law of the Lord, and in His law meditates day and night. He will be like a tree planted by rivers of water..." from Psalm 1
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RE: The odds of passing on a disease - 10/3/2008 12:55:23 PM
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TammyIsBlessed
Posts: 1635
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We almost would've had to deal with this decision.
My dad died of hypotrophic cardiomyapathy, which is a heart disease that generally affects younger people. When you hear of totally healthy athletes suddenly dropping dead - this is often the condition that they have. There are often few to no symptoms until death. It is, however, very easy to detect if you know to look for it. Basically the heart muscles thicken until they are too thick. There is no cure. Nobody knew my dad had this disease, so his death was a complete shock. My sister and I were already born at the time - so we had to go for testing every 4 years until we were around 20 yrs old (we tested A-OK!). The theory being - if there were no signs of the disease by that point, we should be in the clear. A person with this disease has a 50/50 chance of passing this down to their children.
They recently have come up with a test to test for the gene - my sister and I both went for the test and neither of us have it! The other great thing is that we cannot pass it down to our children, because we do not have it.
There are sometime less severe forms of it. It turns out that my dad now also has this disease, but a less severe form of it. This meant that his 2 biological children also had to be tested - they are also disease free! It's quite miraculous actually!
When they diagnosed my dad, they recommended that all his siblings be tested - and if they did test positive, their children should be tested. However, many of them have not gone in for testing because they just don't want to know. THAT is something I cannot understand at all!
One thing that is scary - one of my cousins has not gone in for testing because he is a pilot, and if he tested positive for this gene, he wouldn't be allowed to be a pilot anymore!
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I am only one, but still I am one. I cannot do everything, but still I can do something. I will not refuse to do the something I can do. Helen Keller
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