I have been reading many questions here lately, of women actually wanting to stop desperately needed medical regimens in order to have babies. Some of these women are considered Terminal. Also about women that actually pay massive amounts of money to put there already taxed and diseased body through fertility treatments, in order to have a baby. I am well aware that sometimes its an accident, sometimes your pregnant and then learned about it. My question isn't for those. I am really only wondering about women or couples that KNOW they are terminal or able to pass a debilitating disease off to any or all their children.
After a lot of thought, I wonder. Is it selfish? is it love? is it a hormonal drive to procreate despite the knowledge they should not?
I have had the non-pleasure of being on both sides of infertility/fertility. With my first husband, I could not have children. Going 7 years thinking it was my problem until extensive medical evaluations revealed, it was my husbands problem. After 2 painful, dangerous miscarriages, and a stillborn son. We had the testing done, with the percentages on the high side, that our babies would have numerous issues, disease, and syndromes. My family has very little past history, but my husbands was full of many horrible, debilitating diseases and disorders. We both decided adoption would be good for us, then some other un- and foreseen problems drove us to divorce. I had no children.
Going into the second marriage and relationship, I realized that there was absolutely nothing wrong with me. Having 3 gorgeous children fairly quickly. NO planning, no treatments, nothing. Even then one of our children was born with a condition that is unknown in cause. They can not say its genetic, hereditary, or environmental. They simply haven't a clue why it happens, YET. Theories only so far. If I had known I was going to give birth to a child with a deformity, I think I would not have. Though I do love her with all my heart, I also would not want a child put through what she has gone through again, for the sake of cosmetic purpose.
If I knew I had a condition that would have a HIGH percentage of possibility in showing up in my children, or worse yet grand children, as often things skip generations due to carrier's. I wouldn't do that just to satisfy my need for children.
I really want to hear about others opinions on this subject.
Lets be adult and not put anyone down, or make anyone think they are less of a person for their choices, its a free country yet. Everyone is entitled.
As for the RA comment that I posted, that is my personal choice and belief, it has a little to do with this question, and NOT all of it. There are other questions as well, as well as new articles and personal experiences. As its fine to bring up past questions, this is not about that, you can make it that if you want, I simply wanted your opinion, but not really an opinion about my opinion about a topic other than this. I am very pleased with all the answers. I find most of you were able to answer exactly what I wanted to hear.
I think it is a deeply personal choice. Since none of us can actually walk a mile in another's shoes, neither can we fully understand another's choices. But then we don't REALLY need to understand each other to respect each other, do we?
:)
I understand what you're saying and I am grateful I didn't really have that decision to be made. But another way of looking at it is if we question someone deciding to have a child when they may pass along a disease, then I'm going to question why people who have no money, have no time to spend with their kids, are in horrible marriages etc decide to have kids...especially when they already have 2 or 3. And I do question that...
My sister - my best friend - was born with a fairly severe form of spina bifida. I'm glad my mom didn't have knowledge of our genetics. Yes, my sister has been through hell at times. But she has been such a blessing to this world too. And she has two beautiful children of her own.
Genetics are important but as my husband's Yale-trained, highly qualified MD says - they're not the whole thing. Expression (or non-expression) of genes is important too. That's why our environment plays such a critical role to our health.
Amen to Theresa's post.
Is this about the Rheumatoid Arthritis post? You do know that Rheumatoid Arthritis is an auto immune disease and not a genetic (I want to be clear, that while researchers think that SOME people may inherit the disease, the factors are unknown and are thought to be caused by evironment, genetics or hormones or a combination of those. Not genetics alone and not all cases are genetic) condition, right? Sorry, but this subject is sore for me. My husband and kids have Type 1 diabetes (auto immune, NOT genetic) and we have to endure people's ignorance about the disease all the time as well as the criticism that comes from that ignorance.
Like it or not, my opinion is that you have made yourself judge and jury to people like the woman with RA who wants to have a baby. Let people take it up with their doctors who know the truth about genetics and risks.
Casey, do you realize how exploitive you seem of your cousin's son? You want us all to take a peeky at a person we don't know who is expected to die just to back up an opinion? I am against taking advantage of people's privacy, especially those who are vulnerable.
I'm only going to say that every single life is precious no matter how it arrives or who delivers it, and that what drives us is love. Our entire purpose for being is to love. No matter how long or short a life, no matter how damaged or perfect our genetics, that life is precious.
Very interesting post. My daughter has a genetic disorder, it is very rare, I don't have it, no one knows why she does. It is X linlked so any male children she might have would be miscarried.
She is only 7 and i'm hoping there will be more genetic counseling available when she is older to help her out with this decision.
I know it will ultimately be hers to make with her future spouse. But I am trying to come to terms with the fact that i may have no biological grandchildren from her, or conversly i may have to watch her deal with many miscarraiges should she try.
Personally I would rather encourage her now to consider how wonderful adoption can be.
This is a very personal choice and everyone is entitled to theirs. I will share a little of mine with you.
In 1997 our daughter was born with Cystic Fibrosis. Neither my husband nor I knew we were carriers and we did not have any family with the disease.
There is a 25% chance that any child we have will have this disease. To me, those odds are much too high. We made the decision that we will NOT have anymore biological children.
Our daughter is doing very well and there are many medical advances that are extending the life of people with Cystic Fibrosis. BUT the disease sucks. It is a constant battle to keep our child healthy. She does 1-2 hours of treatments a day. She is 4 years old and she takes 31 pills a day when she is healthy and more when she is not. It is an exhausting, heart wrenching, and expensive disease. Not something I would wish for anyone to deal with.
All of this being said, my daughter is the JOY in my life! I am so thankful for her.
Personally, I think it is selfish to knowingly pass on a life threatening genetic disease to your child. I couldn't do it.
Depends on the illness. I saw your response to someone posting earlier - RA is not a horrible disease. I have a couple of friends who have this. Do they wish they didn't? Sure. Do they wish they never lived? Of course not. Are there extreme cases where people are affected when they are very young? Sure. But there are many, many more people who won't have any symptoms until they're 40 or older, and who are able to care for themselves, their spouses, their children, have jobs, and enjoy life, just with some limitations.
I was a surrogate for a woman who had a hysterectomy due to endometrial cancer in her late 20's. Is there a chance that the cancer was hereditary? Maybe. Will her two children possibly be at a higher risk for having cancer? Maybe. But maybe not. Her doctors couldn't trace a root cause, nor could they guarantee that her children would have the same risk of cancer as anyone else, but neither could they say that her kids would have an increased risk. So with some help, she and her husband have two beautiful, healthy children who are biologically theirs. Life is good.
Again, I think it depends on the disease. I don't think that two people who are known carriers of something like Cystic Fibrosis should risk having a biological child and there are other terrible diseases that fall into this category (like Tay-Sachs) where I think the responsible thing to do is get screening. My husband is Jewish so I opted to have all of the testing for Jewish carrier diseases because we knew that if I tested negative for them, we would have nothing to worry about. If I had tested positive for any, we would have had to do further testing and weigh our options.
I have a friend whose husband had CF - she knew this when they were dating and got married and had a baby anyway (she was not a carrier). He passed away when her son was 6 and I know that she treasures those years they had together and has no regrets about having a baby knowing that his father would die while her son was young. I don't know if I would do the same, but I certainly don't think she's selfish or made a bad decision.
Anyway...I think that it depends on the circumstances of each case and that it's not really for us to judge.
I think it depends on the disorder. I have osteogenesis imperfecta, or brittle bone disease, which is genetic. There is a 50/50 chance my children will have it. And wouldn't you know it, one has it and one doesn't. The kicker is I didn't even know I had it until I had my son, which is my second child, and I have it because of a mutated gene, meaning, that no one in my family has it. Only he and I. He is more afflicted than I am, so that's how I found out.
I think when it comes down to it, you have to know what you're getting yourself, the new child, and the children that are already here into. This disorder, it's 'true'. Meaning, my children will have the same type as I do. Being that this disorder is on a spectrum, they can be more severe than I, but not as severe as a different type...if that makes any sense.
If I were to do it over again, I would have my children again. My son gets around better than anyone in this house. However, while I would love to have another child, I probably wouldn't. This disorder isn't stopping me, and he doesn't seem to be bothered by it, but what if my next child is? I don't feel comfortable making that decision for him or her. I tend to waffle about this though. It's tough to deal with, even though it seems like such an easy decision to make.
I'm with Theresa! :)
(Theresa--hubby, hubby!!!)
If I was terminally ill, even if I didn't have a genetic disorder, no way would I have a child. If I was living with a genetic disorder, it would depend on the severity and chances of passing it on. Assuming it was not debilitating, I would probably roll the dice once, but not twice. I saw on the news that lady who is a dwarf and can not really do anything on her own because of her arms and legs. She has 3 children, 2 of whom have her same condition. I would probably not make the same choice because she can not even take care of herself without constant help and of course the issue of passing on the disorder.
I think it seems to be human nature to want things that we can't have or that we are not supposed to have. One of the reasons coveting is covered in the 10 C's.
I would venture to guess that having a child when you know you are ill and know that you could possibly pass a gene on to the child is an extremely difficult emotional struggle for some. It is also very personal.
I know I would not consider having a child if I was unhealthy, but that's just me.
I often wonder about this myself. I think if I was a carrier of a serious genetic condition, that could potentially be passed onto my child, no, I would not choose to have children. I would probably go the adoption route (although that's very expensive), or not have kids at all. I don't think it's worth risking having a child with a terminal illness or a life-altering deformity/condition.
I don't really understand how other women can justify knowing about the risks and going ahead anyway. When they look at their afflicted child, do they not feel any remorse for the informed decision that they made? I wonder.
I would not have a child if there was a high probability of some genetic disability showing up. But then again, I have never felt the "need" for children. I had one child when I was 20 and then a hysterectomy when I was 23. Never regretted it and never felt a burning desire for more children.
I think that there are so many genetic things that can be passed down if we are afraid to have a child that might have a disability in some way or another through their life we should never have children. My father had colon cancer which he could have passed to myself, my brothers or our children. Does that mean we should not be born. There are so many things that can not be determined. When I was carrying my boys there was no way I would have gotten the genetic testing done. I know others that wanted to get it done but just wanted to know what they might have to expect.
I found out during my second pregnancy that I am a carrier of Fragile X. I prayed to God that my child would not be a boy. Luckily, I have two girls but I will definitely educate them and urge them to get tested so they know their chances of giving birth to a child with Fragile X.
I have a cousin that married a woman. They had a baby...he has multiple sclerrosis...the kind that is genetic and comes from the mothers genes. They divorced. She remarried...had a baby....and the poor child has the same disorder. Brandon...my cousins son is around 22 years old. He is expected to die this year. If you would like to see him...you can find him on FB....Brandon Rhoades...in Virgina. You can see him in his wheelchair. He is very loved by family...but his short....should I say...miserable life...watching his youth pass by...is almost over. And dare I say...the stupid mom knew of the chance percentage of having another child with this. So look at his picture and believe me.....it will change your mind if you have any doubt. Bless the innocent children on this Earth.
it depends on the genetic mutation.
You gave the response to arthritis so i looked up the info on arthritis
it's going up 40% more by 2030 from 21% so you're claiming 61% of people shouldn't procreate..b/c they may be in pain when older?
If I knew my child could be born with a rare condition to cause pain and no sustainable life I would choose not to have a baby. If you aasked any person with arthritis myself included if im in so much pain i cant enjoy life and would rather niot have been born I bet you'll hear a big NO... thats like saying anyone with cancer in their family shouldn't procreate...those two things arent guaranteed and are so widespread it's crazy.
Arthritis info:
More than 21% of American adults (over 46 million people) have arthritis or another rheumatic condition diagnosed by a doctor.
Nearly two-thirds of arthritis patients are under 65 years old.
More than 60% of arthritis patients are women.
Disease rates are similar for whites and African-Americans; these rates are higher than those for Hispanic people.
By 2030, the number of people with arthritis is expected to rise to 67 million, reflecting a 40% increase.
I think the questions are"what is high?" and "how serious is the disorder?"
I know somone who recently went through this, and after discussing it with her doctors decided to have her own child with her own eggs. She has a disorder with a reasonable chance (25%?) of passing it to a child/grandchild and thought long and hard about all the options (adoption, surrogacy, another set of eggs & carrying herself). Each one had so many issues and problems that it was not an easy choice. She'll be a great mom, and definitely wanted a child in her life, but it won't be a simple road. We're all just hoping that she can carry the baby without harming herself and that the child comes out without any issues.
Then again, as you said, you had a child with a problem and no history to warn you, so there are no guarantees.
There are so many varying degrees of "severe" - what is "severe" to one person, another person might be able to handle with great ease. My husband and I discussed this when faced with the test for Down Syndrome...we decided not to be tested early because we decided it wouldn't change our minds in regards to "keeping" the pregnancy. If something was wrong, it would show up on the ultrasound so we didn't need to know early and risk a false positive.
A friend of mine has a LOT of cancer in her family - and I mean a LOT...her aunt, her grandpa, another aunt, and her, and others...my friend is the only one still alive. They did some genetic testing to see if there was a genetic link that makes them more susceptible to cancer and she chose not to find out her results so she wouldn't worry about passing it on to future children.
Interesting question...tough to not get emotional about it :-) An interesting book might be "Handle with Care" by Jodi Picoult. It is about a mother who has a daughter with OsteoImperfecta (brittle bone) - a severe form of it. The mother goes against her OBGYN friend and says if she knew how severe this would be, she would have terminated her pregnancy - and she claims her friend didn't warn her/tell her the truth about how bad it was. I am not sure the exact plot - I started reading it when I was pregnant and I couldn't get past the first chapter because it was so heart wrenching...but I am sure the topic of the book relates to this question well! She is a GREAT author!! :-)
