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The odds of passing on a disease - 9/29/2008 7:23:44 AM
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Sideways
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The large family thread got me thinking. With medical testing we can see if we are carriers for things like cystic fibrosis. You might find out that you and your spouse have a 1 in 4 shot of having a child with this that (eventually) lethal disease.
Would you still choose to have kids together? Would you adopt? Use a sperm donor? How high would the odds have to be before changing your plans? How severe would the disease have to be?
We're NOT discussing abortion here! Let's take that off the table right now. But before a child is even conceived, if you knew genetics were against you, what would it take, if anything for you to change your child-bearing plans.
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RE: The odds of passing on a disease - 9/29/2008 10:55:14 AM
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Zhi
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The thing is that like gender, it's not a cumulative chance.
Just as each child has a 50/50 chance of being a girl (or a boy), each child would have a 25% chance of cystic fibrosis. The first one has a 1 in 4 chance... and if the first one doesn't have it, that doesn't mean that the next one has a 1 in 3 chance or so on. Each child would have a 1 in 4 chance.
So, basically, you're taking the same risk whether you have one child or 15. So, it's really not a large family question, it's an any family question (I know that you phrased it as "any children at all", but I thought I'd point out what the statistics mean so it doesn't go down a "large family" path.)
It's a difficult question. Every time you conceive there's a risk of something going wrong, whether from genetics, environmental factors, or just bad luck. Even if you do have a healthy child, something could go wrong... they could be injured, make bad choices, be the victim of something horrible... It's only recently that we've even been able to ask this question. One of my great aunts had Downs Syndrome. According to my obstetrician, it's not because my family is genetically predisposed, it's because she was 55 years old when she had my great aunt. And, pretty much nobody has a perfectly clean genetic slate. My husband's family is disposed towards heart disease and obesity. My family is disposed towards skin cancer. Common, yes, but still not good.
So, until they start doing massive genetic engineering on people, we're all rolling the genetic dice. It's going to have to be up to the individual potential parents how they want to deal with it I guess. For us, potential genetic disposition towards heart disease, obesity, and skin cancer is acceptable risk.
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RE: The odds of passing on a disease - 9/29/2008 11:18:19 AM
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Mrs.X
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I hadn't planned on having kids with my husband after hearing his brother died of cystic fibrosis (it wasn't the only reason though). We did anyway, and fortunately niether child has it. I opted to not get them tested in the womb since we couldn't have done anything about it anyway, and insurance covers getting them tested after being born. Not sure if we could have cared financially for a child with cystic fibrosis, so if we had one, we may have had someone adopt him/her. Having two healthy kids, if we had more money, I'd have more kids with my hubby, and just take the risk.
quote:
For us, potential genetic disposition towards heart disease, obesity, and skin cancer is acceptable risk.
Totally agree. I'd put diabetes on that list too.
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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 - 9/29/2008 11:21:53 AM
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karlie
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It would depend on the genetic problem I knew about. If it were a disease that was very difficult to live with and caused much pain, then no, I would not purposely get pregnant and would choose to adopt.
My niece(who passed away at the age of 12) was diagnosed with a genetic brain deterioration disease as a toddler. For years, we all watched her fight a painful and frustrating battle that we knew would end with her death. It was a slow and heart wrenching process. To make it even more stressful, when she was diagnosed, my sister was already pregnant with her second and told the baby would have a 25% chance of having the same disease. It was a nightmare of waiting...even after her birth, they couldn't be sure she wasn't affected until she was close to two years old. So, we've been on the end of waiting it out, and watching one suffer and die, and if I knew in advance of getting pregnant, I'd never willingly choose to put a child though that. Obviously we loved our niece and don't believe her life was a mistake. She brought a lot of joy in the first couple of years of her life. But, she also suffered greatly for years, and to know in advance that would be the life a child would have and choose to get pregnant anyway seems very cruel.
However, if it was something more minor and they could have a happy and relatively healthy life, then I would probably make a different choice.
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RE: The odds of passing on a disease - 9/29/2008 1:07:19 PM
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shadowspring
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That is a thought-provoking question. I would find people who had the issue at risk and talk to them about it. You know, go to the hospital and ask if any families/patients dealing with CF would be willing to talk to me about it.
Probably I would find that no one who is loved regrets being born, even if their lives end in suffering.
However I might find the opposite to be true. How people who actually have the illness in question feel about their lives would definitely influence my decision.
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RE: The odds of passing on a disease - 9/29/2008 3:40:01 PM
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OneOfHisJewels
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quote:
after hearing his brother died of cystic fibrosis
I'm sorry to hear that.
quote:
and fortunately niether child has it.
That's great.
Christina, it is possible that your husband is not even a carrier..statistically, if 2 parents are carriers, the odds are like this, supposing they have 4 children: One will have the disease, one will be a carrier, and 2 will be free and clear. Of course, like I said earlier, there are no guarantees for the odds to work out exactly. In that same book by Frank Deford, he talks of one family that had 3 girls that ALL had CF. Also, if your husband is a carrier, you would still not have a child with CF unless you yourself are also a carrier. It might be interesting for you two to get testing done.
He, He, I think Mrs. Wifey and I just cross-posted, because we said at least one of the same things.
quote:
Would you still choose to have kids together? Would you adopt? Use a sperm donor? How high would the odds have to be before changing your plans? How severe would the disease have to be?
I am going to answer that question in the general sense, rather then just regarding cystic fibrosis.
1. If I knew there was a great risk of a severe disease or a severe deformity, NO I would not take the risk of having a biological child.
2.Yes, I would with all my heart and soul, try to adopt.
3.No, I would not use a sperm donor. I am not going to judge anyone else, but FOR ME PERSONALLY, it would feel like adultery.
4. If the odds are even very minimal for me, that will still be enough of a chance for me.
5. It would have to be a severe disease. For example, my family is prone to being very near sighted. I would not consider that a reason to not have had kids, had I been married younger, especially nowadays with contact lenses, laser surgeries, and if one uses neither of those, the frames these days are quite attractive, IMO,
This was kind of an easy question for me to answer, because I'm pretty much 95% sure I have already made this decision. I do still want to marry and have children, but I have pretty much decided I want the children through adoption (and I have seen ads for agencies with no age limit on the adoptive parents).
My reason for only wanting, at this point, adopted but not biological children, is that, at this point, I would be a high risk pregnancy. I would be high risk for the following reasons:
1. my age (I'm already 36)
2. I have medical issues, some related to the reproductive system and some not.
I might feel more willing to take the risk if I had not had a disabled sibling. I love my sister dearly, but in all honesty I don't want to go through that again. So yes, I would tell the agency I only wanted a healthy child.
I also don't want a big family, although I used to. Although I like kids, I realized my personality isn't the kind to handle the busyness, and the dealing with wide age ranges that comes from having a big family..or all the clutter that some big families live with (I know not all).
< Message edited by OneOfHisJewels -- 9/29/2008 4:05:00 PM >
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RE: The odds of passing on a disease - 9/29/2008 9:22:44 PM
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Mrs.Wifey
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quote:
Mrs. Wifey, I am sorry your BIL wishes he had never been born. He must be in a lot of pain right now. Are there not any treatments that can make the end of his life easier? I pray that the doctors will find a way.
His problem is not so much pain, but knowing the feeling that his life is essentially worthless... I think, anyway. He and his younger brother have Duchennes muscular dystrophy, most people with this form of MD don't typically live past their late teens or early 20's.
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If I knew that both my husband and myself were carriers of CF, I would opt for sterilization and adoption as well.
It's one thing to take a known risk, but if you know 100% for sure your child would have an illness like CF, I would refrain from getting pregnant at all.
Even in that case, it's not 100% that your child will have CF. Honestly, we would probably still opt for sterilization. Not that we have anything against children with special needs, it's just not something that I think we would choose to take on.
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RE: The odds of passing on a disease - 9/29/2008 9:29:14 PM
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isaacsmom
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Our children have a 50/50 chance of having Congenital Hip Dislocation. Thankfully, neither of our 2 children have it. My dad and I have it severely, and one of my cousins has it. It could appear in my grandchildren as well.
I endured several hip surgeries as a child, as did my dad. However, we now know which hospital and doctors and therapies to use to correct the problem, and if we have any children in the future who have the defect, they will hopefully only need one surgery very early on to correct it and they would be fine. We discussed this before we married and feel at peace with it.
As to the terminal disorders, we hadn't discussed it previously because neither my husband or I are carriers of anything of that nature. If that would've been the case, I'm sure we would've opted to adopt.
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RE: The odds of passing on a disease - 9/29/2008 9:31:06 PM
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Mrs.Wifey
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Non-terminal disorders like diabetes, PCOS, arthritis, heart disease... things that are actively treatable would not make us opt for something like sterilization.
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RE: The odds of passing on a disease - 9/29/2008 9:43:23 PM
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OneOfHisJewels
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Maggie, this brings me to a question I have always wanted to ask you. Please know I am not trying to be sarcastic, I am genuinely interested in your answer.
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?
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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 - 9/29/2008 10:13:20 PM
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Sideways
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If both of us had the CF gene our children would have a 1 in 4 shot of CF. We would not take a chance of conceiving under those circumstances. Now, a genetic predisposition to cancer or heart disease? Well that's different. Diet, exercise and environment can affect a person's chance of those types of diseases, so we would probably take the risk and do everything possible to tip the balance in our child's favor.
I too, think adoption is a beautiful and noble thing. But to many folks, are way to hung up on having a child "of their own blood". Even the conservative Christian community seems to have such a negative view of women who surrender their child to adoption, calling it "selfish" and "the easy way out".
If I knew I had a high chance of giving my child a painful, debilitating disease that would like take their life early on, then I would pursue adoption and thank the Lord for the blessing of my adopted children.
All life is valuable, but we can choose to love those who are already alive, instead of being so bent on having our own genetic offspring.
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RE: The odds of passing on a disease - 9/30/2008 6:45:55 AM
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Sideways
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Even if you knew you'd be subjecting that child to a short life of suffering? When there are so many children already born who need good homes?
I know that every life deserves love and respect, but to deliberately conceive under the circumstances mentioned almost seems... cruel. God is ultimately in control, but He did delegate a certain degree of control to humans, and that includes some (not all) degree of control over our fertility.
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RE: The odds of passing on a disease - 9/30/2008 7:24:31 AM
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PrincessDonna
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Growing up, I knew someone whose first child had a genetic degenerative disease (can't think of the name right off...). He never walked, never said Mama, and died in his sleep at the age of 2. His body didn't look deformed or unhealthy, but he was definitely ill. It took them 5 or 6 years, but they did decide to chance it one more time. Their second son is healthy. I'm glad they were able to have another child and that he is healthy, but I don't know if I could have taken the chance they did, after watching how Ben lived and seeing them suffer after he died.
I wonder if any of us can really say for certain what we would do without being faced with such a choice.
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his faithfulness will be your shield and rampart.
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RE: The odds of passing on a disease - 9/30/2008 7:37:49 AM
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Sideways
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Donna, did they know the odds of having a second child with such a disease?
I understand what you're saying, and I think it's a personal choice for the parents, but I think I'd opt for adoption myself, under those circumstances. That's just me, though.
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RE: The odds of passing on a disease - 9/30/2008 7:46:57 AM
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PrincessDonna
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quote:
ORIGINAL: Sideways
Donna, did they know the odds of having a second child with such a disease?
I understand what you're saying, and I think it's a personal choice for the parents, but I think I'd opt for adoption myself, under those circumstances. That's just me, though.
I'm not sure exactly what the odds were, but from what I understood, they were pretty high. They didn't know there was any risk at all before Ben was born.
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He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
~Psalm 91:4~
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RE: The odds of passing on a disease - 9/30/2008 9:13:24 AM
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lexie
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quote:
A person born into poverty or persecution at least has a decent chance of surviving to adulthood.
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.
(I'm not judging anyone for their decisions that they make, I'm just throwing that out there as a thought.)
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He must be in a lot of pain right now. Are there not any treatments that can make the end of his life easier? I pray that the doctors will find a way. 
)...
my soldier! 
