I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: MattyBoy100 on October 13, 2007, 04:09:48 PM
-
My sister is having her first baby about a month from now. We don't if the baby is a boy or a girl as they are keeping as a surprise. There is an issue which my sister doesn't want to discuss and I can't stop thinking about it. My condition is caused by Alport's syndrome. We didn't know I had it until I was diagnosed last year when I became very ill. My Uncle also had it though I never heard it called Alport's syndrome. This is where things get complicated. Females can be carriers of Alports and pass the defective gene on to their children. Boys have a 50/50 chance of developing Alports, hearing loss and kidney failure. It was believed that girls would only be carriers but research has shown that they can develop some symptoms of Alport's but USUALLY not full blown kidney failure.
There are a lot of issues for me like did my parents know there was a possibility I could end up becoming ill? That is not what I want to go into in this post however.
What I am worried about is that if my sister does indeed give birth to a boy then what will the future be like for him? Will it be a bed of roses or, in 20 yrs' time will I be giving my nephew advice on dialysis and all that goes with it?
And, in 20 yrs' time how would his parents answer him if he asks why they brought him into this world knowing that he could be ill?
Because it is Alport's syndrome, my sister was considered unsuitable as a donor to me due to the fact that she my get some symptoms of the condition herself in later life and it was best to keep her kidneys.
We are all excited about the new arrival to our family but I can't help but worry for him if it is a boy.
-
My husband has Alports and we have 2 daughters we were told were carriers, but our 5 yr old has had protein in her urine for almost 2 years and in June we were told she has stage 2 ckd and will have young age renal failure. If she has a boy he could be OK since it's a 50% chance he does not get the Alports gene. So far our daughter has done really good about Dr's test and meds and has only 2x's asked why does she have to have a sick Kidney. It could be allot worse that's what gets me through it all even though I have days I feel terrible that she also has to go through this. :cuddle;
-
I don't know anything about Alports or how it's carried on from one to another generation. I do know we shouldn't base having kids on wether or not they have a chance at becoming ill in the future, as even a child with parents with a clean bill of history can become deathly ill... it's a chance each person much take upon themselves in their jounrey to want to have a child.
Good luck hun. :grouphug;
-
The fact that some healthy parents might produce seriously ill offspring without even suspecting that they were passing on a risk to future generations is absolutely no excuse for parents who KNOW that they are passing on a serious risk of a serious disease to pretend that there is no guilt on their part for what happens to the child. When I was in my twenties and thirties, and my friends, girlfriend, relatives, and parents were urging me to produce a child, I refused, even though the only illness I had at the time was type 1 diabetes, which is only about half as bad a disease as renal failure, and for which there is only a 7% risk of males passing it on to their children. I tried to explain to people that my conscience would not let me expose my own children to a 50 times higher than normal risk of having a serious disease, even though that risk was relatively small compared to the chance that they would be healthy. If I had had a child with type 1 diabetes and had seen it suffering misery which would not have existed in the world if it had not been for me taking a risk with someone else's future life without even asking them for permission, I would have had to slit my throat.
And yet, much to my disbelief, almost all my diabetic friends have chosen to have children.
-
And yet, much to my disbelief, almost all my diabetic friends have chosen to have children.
I think they do it to fulfill their needs.
-
And yet, much to my disbelief, almost all my diabetic friends have chosen to have children.
I think they do it to fulfill their needs.
::) ...........................
-
And yet, much to my disbelief, almost all my diabetic friends have chosen to have children.
I think they do it to fulfill their needs.
:banghead; :banghead;
I have changed my post...not my mind, if this subject came up elsewhere ...fine.
Mattyboy, I hope everything turns out okay. Keep your chin up :grouphug;
-
Thanks Stauffenberg I'll make sure I go slit my throat!!!! As I've said before these types of comments make me not want to try to give SUPPORT and HELP to someone. We don't need people making us feel like crap.
-
Mat, I am sure your sister and her husband considered all things, including the Alports, before deciding to have a
baby. However the decision is made, so try to be happy for them. I will keep you all and especially the baby in my
prayers.
In the meantime---congratulations, Uncle.
:bestwishes;
Love, Mimi
-
Wow stauffenberg.. your way harsh.
Lupus is hereditary, there is no guarantee my kids will get it, and I wouldn't ever go back in time and not have my kids.
-
I don't think Lola that Stauffenburg was pointing a finger directly at you. He did what he thought was right just as you had children which you thought was right. I'm not too sure about the slitting your throat part, might call that a bit extreme. Everybody makes their own decisions in this life and everyone's decisions are different. Personally had I had the type of disease I could have passed on, I too would not have had children. But that's only my :twocents;.
On a lighter note: your niece or nephew is on his/her way Matty. Just enjoy him/her. They are the hope that there is a better life. :)
-
I don't really understand what is going through people's minds when they decide to have children even though they know they are passing on a serious genetic risk to them. I say this especially because I know personally several extremely kind, intelligent, pleasant, and caring people who decided, apparently without giving the matter a second thought, to have children whom they knew would suffer from an elevated risk of a serious disease. If someone could explain to me what apparently good and moral people are thinking when they do this, I would appreciate it, since I am genuinely mystified at what is going on.
I suspect that many people assume that whatever is legal, not openly condemned by society, natural, normal, conventional, or mentioned favorably in the Bible in the general case, is simply to be taken for granted as morally acceptable in their particular case with no further thought necessary.
Some more sophisticated arguments I have heard say that you cannot harm someone who does not exist yet, and since the future child does not yet exist when you decide to burden it with a future risk, you do no harm. But on this reasoning, we commit no sin against future human generations if we destroy the environment so they don't have a habitable earth when they come into existence. Another view is that you do the unborn such a favor by giving them life, that even giving them a life burdened with the threat of terrible disease is a net benefit. But the problem here is that perhaps the child would rather not have been born than have to deal with that threat or eventual reality. True, you create a place in the future world where there is life, but without your child, someone else would have taken that place, probablly with a likelihood of a medically better life. By having a child you create the chance of misery in the world in the future where there would otherwise more likely have been happiness without your action.
For my own life, I consider that the most important thing I have done for humanity in all my time on earth was not to have children, and I often reassure myself by reflecting on all the misery there will not be in the future world because of my decision.
-
::)
-
Matty and Stauff, I believe that most people who know they have a genetic disorder and CHOOSE to have children, do it with the hope that modern medicine will solve the problem by the time their child needs medical help.
My stepdaughter had her last child AFTER she was diagnosed with PKD. I don't know why. They already had a son and a daughter. Every child has a 50/50 chance of having PKD. Maybe she was hoping for good luck? or trying to insure that if one of the kids needed a kidney there would be an increased chance of having a sibling donor? maybe a condom broke or birth control failed? Regardless, it was their choice.
My stepson also had a child AFTER he was diagnosed with PKD. He now has three boys but the adopted son is the only one without the sword of Damocles over his head.
My husband passed this horrid disease on to two of his three children, decades before he was diagnosed. He now worries about 5 grandchildren who all have a 50/50 chance of having it - two of whom were born after their parents diagnosis.
-
I'm just glad my two daughters were born many years before I developed kidney disease, so I don't have to worry about this issue. In a way, God has blessed me.
-
True, you create a place in the future world where there is life, but without your child, someone else would have taken that place, probablly with a likelihood of a medically better life. By having a child you create the chance of misery in the world in the future where there would otherwise more likely have been happiness without your action.
What if Steven Hawkings parents knew of his defects and decided to have him terminated? What about Christy Brown (The man in My Left Foot)? We just don't know how a person labeled disabled will live their lives, how they can enrich others lives. People with disabilites like Ray Charles and Stevie Wonder have done such amazing and wonderful things with their lives. THere's probably hundreds if not thousands more disabled people born that way or not ( I know Ray and Stevie weren't born with their problems.)
I can certainly understand why you choose not to have children and I respect that. But these children who were born disabled deserve every chance at life we can give them and their parents don't deserve scorn for bringing them into the world.
Donna :bandance;
-
What I am worried about is that if my sister does indeed give birth to a boy then what will the future be like for him? Will it be a bed of roses or, in 20 yrs' time will I be giving my nephew advice on dialysis and all that goes with it?
And, in 20 yrs' time how would his parents answer him if he asks why they brought him into this world knowing that he could be ill?
Hopefully by the time the baby is older they'll have cures for all these diseases. Maybe He/she won't even have it. I think it's so sweet of you to be concerned, you just touched my heart with you being so caring. :) THe baby is lucky to have you for an uncle.
Donna :bandance;
-
True, you create a place in the future world where there is life, but without your child, someone else would have taken that place, probablly with a likelihood of a medically better life. By having a child you create the chance of misery in the world in the future where there would otherwise more likely have been happiness without your action.
What if Steven Hawkings parents knew of his defects and decided to have him terminated? What about Christy Brown (The man in My Left Foot)? We just don't know how a person labeled disabled will live their lives, how they can enrich others lives. People with disabilites like Ray Charles and Stevie Wonder have done such amazing and wonderful things with their lives. THere's probably hundreds if not thousands more disabled people born that way or not ( I know Ray and Stevie weren't born with their problems.)
I can certainly understand why you choose not to have children and I respect that. But these children who were born disabled deserve every chance at life we can give them and their parents don't deserve scorn for bringing them into the world.
Donna :bandance;
So people who have kids who have an inherited disease think the kids should be grateful they are alive- never mind the fact that they have a disease? How many people with kidney disease are grateful they have it? or Lupus? are you glad you have it- or does it suck mightily? Remember the thread where you were asked if you would change being sick and having kidney failure? 99% of the people who replied were adament that they did NOT want this to be thier lives, but had no CHOICE. probably half of the people who responded were angry the question was even asked...yet its okay to make a baby that has a significantly higher risk of contracting the same disease? you have a choice not to have a child in those circumstances, and anything else is justification for being self-serving.
would you change it?
http://ihatedialysis.com/forum/index.php?topic=3745.0
-
Is it possible that the baby was an accident? And do they not believe in abortion? These things need to be considered too.
I know my husband and I will not be having children. We don't want to bring a child in to this world knowing that they will likely end up with diabetes and/or Lou Gerhig's Disease (ALS). My father and his father, plus me are/were all type 1 diabetics, my husband's side of the family has a history (including his dad) of type 2 diabetes, and my dad and his mother all died of ALS. All three of these diseases are hereditary and we just can't bear to bring a child into the world to suffer that. If finances allow it some day, we may go through others means, like adoption, for a child tho.
-
I have Lupus, it is hereditary. My parent's never knew anyone in our family had it until after I was dx'd.. but I would hope that if they had known, they would of still had me. I may not like this disease at all, or the kidney failure it has brought into my life.. but I still love life, and love alot of things I have got to experience, including having my children.. so I would hope they wouldn't change their minds if they could go back.
-
any pregnancy has a chance of something going wrong. that however is no reason not to have children. my husband and i had no reason to believe there was any possibility of passing any inherited problems on to any child we might have. never the less our youngest child has a sever developmental delay. i challenge anyone to tell me i shouldn't have had kevin. he is the sweetest, gentelest human being you could possibly imagine. what doesn't work, definitely doesn't work, but what does, works overtime. he is constantly doing things that makes you realize that he pays attention and understands much of what is happening around him. just because he doesn't appear to at first glance. i wouldn't give him back even if i could. Matt, just love your niece/nephew and be grateful for every day you can share with him/her. what happens in the future can be handles no matter what anyone says. don't spoil the moment by borrowing trouble. support your sister and her husband and their choice to love one of gods most precious blessings, no matter what.
CONGRATULATIONS UNCLE
-
my husband and i had no reason to believe there was any possibility of passing any inherited problems on to any child we might have. never the less our youngest child has a sever developmental delay.
Grammalady- I also have a child with severe develpomental delay- I love her dearly- but I also had no clue she would have this problem- would I have thought twice about bringing her into the world with the problems she has? If I could have known before I got pregnant-you bet I would have- because no matter how much she lights up my world and brightens my days, the days she cries because she knows she can't do things (like drive), breaks my heart. SHE would chose to be NORMAL if she could be. She also did not INHERIT her condition.
-
Rob and I chose not to have children, due to infertility (I hadn't gone forward with IVF) and because of his health issues. He would have been devastated if our children became diabetics. It runs rampid in his, plus he's a type 1 and it runs in my family as well. We made the hard decision not to go forward with fertility treatments and decided to adopt. We did this once he felt well enough from dialysis. I am so glad we did, I would have never met my son if we didn't. He see's his Dad on dialysis and has the most compassion and love for him. It's wonderful to see them bond. There are so many children out there who need our love.
Also, Down's Syndrom runs in my family, my Mom's brother had it. There was a large chance that one of us kids could have conceived a down's baby. My sister's babies were fine, who knows if mine would have had it. I would have definitely had the test and if our baby had it, we would have chosen to terminate. It would have been the hardest thing in the world for us, but I do not want to put my child through that. I think about the future for that child, what would happen if we died? They would most likely go into an institution and I would never want that for my child.
-
My cousin just had a baby girl, she has down syndrome. They didn't know until the minute she was born, they love her just the same as their son who has no problems and wouldn't change a thing. She is such a cutie pie.
-
and wouldn't change a thing.
I'm sure they love her with all their hearts- Before she was born, they had a vision of her life, and I'm sure it included everything a parent hopes for their child. Now their hopes have changed, and they love her to infinity.
Do you actually think that they would not change her disability if it was in their power?
Don't you think your parents love you despite your illness, but don't you know they would have cured you if it was in their power?
I love my daughter with every fiber of my being, but I would fix her disability if I could.
Having an ill child, or a child with a disability of any kind is heartbreaking for a parent, my heart goes out to every parent every where who suffers FOR their child.(and they DO) which is why the choice to have children that you know has a significantly higher risk is inconceivable to me.
-
Oh yes, I am sure any parent would change it if they could, but we cannot... unfortunately. I would make my daughter's heart prob disappear.
I get what your saying though. :)
-
(alene writing)
This thread is both interesting and worrisome - who should have children and who should not. It is a very dangerous road to travel. But it is intriguing that it is a theoretical discussion - the opinions expressed deal with others, the children. And it opines that their lives are not worth living. I would question the wisdom of that point of view, but I don't have to. Instead, let's add some real sentiments from those that have already been born.
I ask this question in ignorance - I have no known sword over my head so I am heavily prejudiced.
To those with kidney failure, diabetes, or with the swords over their heads, would you have preferred that, had your parents known of a predisposition toward the development of these diseases in their offspring, that they had opted not to have children? ...for you not to have been born at all?
MattyBoy, I wish your niece/nephew a rich and rewarding life that she/he feels is definitely worth living without regard to any hardship she/he has to face.
-
(alene writing)
To those with kidney failure, diabetes, or with the swords over their heads, would you have preferred that, had your parents known of a predisposition toward the development of these diseases in their offspring, that they had opted not to have children? ...for you not to have been born at all?
Yes. I have been miserable my entire life because of diabetes, and given the choice, would not live it over again.
-
I already had Jenna when we found out that my dad's cerebral hemorrhage and death when he was 28 years old was due to hereditary polycystic kidney disease. At the time I didn't know if I had it, but I spoke to a friend of my husband's who is a doctor in Seattle. I asked him about having children, and the risks if I was indeed risking passing it on. He said that there are many genetic diseases where a child would be at risk for early pain and suffering, but this isn't typically the case with PKD. In the majority of cases PKD is not a problem until adulthood. Even if is an earlier onset, it's treatable. He said some people die of natural causes at an old age, without knowing they had it - this is the reason it is passed through generations and families never realizing there was a family history. But I was still worried about it and asked my husband, "Do you think we shouldn't have anymore children, taking a risk of passing on this disease from my side of the family?" He said "Well, if that's the case, I also risk passing on potential problems. We have a family history of alcoholism (which can be devastating) and cancer (various types in his family), heart disease and depression too. If we are going to worry about what we may pass on, who would ever have children??" As it turned out I don't have PKD, but my siblings do. But I ended up with Jenna having a defective bladder, which damaged her kidneys. We never could have foreseen that problem. If the choice is to never have known Jenna, and to have avoided all the anguish of her illness, I would choose to do it all over again, because our lives are far richer to have had her with us. Would she rather not have been born? I will have to ask her.
-
My kidney problem was not hereditary, but I did get diagnosed before my first birthday (want to see the pics from my hospitall-room birthday party?). My ESRD came about because of an e.coli infection. Because my brother had the same flu-like symptoms I did at the same time, we're pretty sure it was something we both ate, so probably something Mom gave us. Everytime Mom sees me, she feels guilty for that (which I didn't find out until last year). But I don't blame her.
I'd never give up the chance to live the life I have. No, it hasn't always been fun; yes, there have been a lot of surgeries, doctors, and countless needles & dialysis treatments. But there has also been love and laughter and graduating from college and having friends and boyfriends and an absolutely incredible husband and a brilliant son and so many experiences that just can't be expressed in words.
Recently, the kidney disease has only made me appreciate these things even more. I'll admit, that wasn't always the case, but as we get older we get wiser, and I thank God every day that I've had the opportunity to get older.
-
There are many children now that need saving--those that need homes. There's always adoption.
-
There are many children now that need saving--those that need homes. There's always adoption.
I agree! We adopted through the Foster Care system in our state, so many kids need a home. Although I didn't give birth to him, no other mother could love my son more than I do.
-
Too bad adoption is not an option for everyone. You have to have money, and so on and so on.. A close family friend went through that process... 6 years later, she finally got to adopt.
-
There is a great deal of financial assistance out there if people want to adopt, including through employers and the government.
-
There is a great deal of financial assistance out there if people want to adopt, including through employers and the government.
Yes, but you forgot to mention, WITH good credit.
-
Pray for the best and prepare for the worse :cuddle;
-
There is a great deal of financial assistance out there if people want to adopt, including through employers and the government.
Yes, but you forgot to mention, WITH good credit.
well its expensive to have kids too -
-
Too bad adoption is not an option for everyone. You have to have money, and so on and so on.. A close family friend went through that process... 6 years later, she finally got to adopt.
Not true. You can adopt through the Foster Care System in your state. You do not need to be rich, you just need to prove you can financially provide for a child. You also need to pass a background check. Adopting through Foster Care does not cost a thing.
-
That's why we don't plan on having any, any time soon, our own or adopted. There's no way we could afford to care for a child. We can barely afford to care for ourselves!
-
Too bad adoption is not an option for everyone. You have to have money, and so on and so on.. A close family friend went through that process... 6 years later, she finally got to adopt.
Not true. You can adopt through the Foster Care System in your state. You do not need to be rich, you just need to prove you can financially provide for a child. You also need to pass a background check. Adopting through Foster Care does not cost a thing.
After what we went through when we were trying to adopt a family member's child, i dont trust the system ONE BIT >:(
-
(alene writing)
To those with kidney failure, diabetes, or with the swords over their heads, would you have preferred that, had your parents known of a predisposition toward the development of these diseases in their offspring, that they had opted not to have children? ...for you not to have been born at all?
Yes. I have been miserable my entire life because of diabetes, and given the choice, would not live it over again.
Oh wow.......this makes me so sad to read this. You can't let yourself be defined by diabetes. I have it. I didn't have it for as long as you maybe but it's just a part of my life it's not my life or how I define myself. Think of all the people who you've touched in your life, the people who's life was made better by the simple fact that you were there. You don't realize how your life can effect so many others. Watch the movie It's a Wonderful Life and you'll see what I mean. When VCR's first came out about 1980 or so this is the very first movie I ever bought. Its message is eternal.
Still makes me cry.
Donna :bandance;
-
I didn't realise I was going to create such a debate but in answer to Alene,
I had a great life until the age of 34 (last year) when I was diagnosed and started dialysis. I don't wish to complain as I try to remain positive but now my life consists of working and going to dialysis. The bits in between when I am free of both work and dialysis I am usually too tired to want to do anything much.
On a more selfish level as well, I watched my Uncle slowly die from his kidney failure. I don't wish to be a scaremonger but it wasn't very pleasant. Pretty close to the end, he was in hospital with a morphine drip which he could adjust himself to alleviate the pain. Sometimes he was so out of it he was unconcious and then suddenly he would wake up and look at his watch which would have stopped and ask us what time/day it was.
I have seen someone at the end of his unnaturally short life due to this illness. It wasn't fair then and it doesn't seem fair now but I am not talking about what is and what isn't fair.
On a personal level, I respond well to treatment at the moment but having seen what my Uncle went through and if I am anything like him then what the future holds does not look pleasant for me, so in answer to Alene, no, I wish I wasn't here. I'm not going to get depressed about it but I choose not to think what is going to happen to me in the future. People talk about medical advances but in reality a lot of the advances with kidney failure prolong life a little bit more but of what quality is that life? Only those who suffer kidney failure can answer that question.
If my parents had known for sure that I was going to have kidney failure then personally I think they should have terminated. Having said that, I know a lot of you are going to be asking about how I feel about my sister having her baby. Well all I can say is that I hope it's a girl and that if it is a boy then I hope he is not affected by the gene deficiency that causes Alport's. I will be very sad if my niece or nephew ends up with kidney failure as I would not like to see him/her go through what I and all of us on this site have to go through with kidney failure. Am I being selfish? No, just realistic and honest. Are people who bring children into the world knowing they could be ill putting their own or their child's interests first?
-
Are people who bring children into the world knowing they could be ill putting their own or their child's interests first?
I don't think anyone wishes illness in their child's future. Hope springs eternal.
Often people don't "know" what will happen. As Goofynina says "Pray for the best and prepare for the worse."
I thought about this - and I realized that the world doesn't need more people - having children is a totally selfish act - it fulfills people's needs. I am sure there's also some biological drive to cause us to procreate - but the decision is more about making a family, which is something the parents want (or it happens accidentally) but there's no reason a child is created that serves the child's interests.
-
(alene writing)
To those with kidney failure, diabetes, or with the swords over their heads, would you have preferred that, had your parents known of a predisposition toward the development of these diseases in their offspring, that they had opted not to have children? ...for you not to have been born at all?
Yes. I have been miserable my entire life because of diabetes, and given the choice, would not live it over again.
Oh wow.......this makes me so sad to read this. You can't let yourself be defined by diabetes. I have it. I didn't have it for as long as you maybe but it's just a part of my life it's not my life or how I define myself. Think of all the people who you've touched in your life, the people who's life was made better by the simple fact that you were there. You don't realize how your life can effect so many others. Watch the movie It's a Wonderful Life and you'll see what I mean. When VCR's first came out about 1980 or so this is the very first movie I ever bought. Its message is eternal.
Still makes me cry.
Donna :bandance;
I was diagnosed just after I turned 6 years old (I am now 30). It's all I've ever known. And I was always sick until I was diagnosed. As a child, I was teased and tormented because i was different than everyone else (diabetes was no where as prevalent 24 years ago as it is today). This continued through high school. After spending 24 years severely depressed and feeling like I live in a shell, it's hard to think otherwise.
-
Are people who bring children into the world knowing they could be ill putting their own or their child's interests first?
I don't think anyone wishes illness in their child's future. Hope springs eternal.
Often people don't "know" what will happen. As Goofynina says "Pray for the best and prepare for the worse."
I thought about this - and I realized that the world doesn't need more people - having children is a totally selfish act - it fulfills people's needs.
I agree. The second we got married, people started hounding us about when we were going to start(!) having kids, most even knowing full well that I probably couldn't have any. All we keep hearing is how they can't wait so they can play with them! We haven't said anything to anyone yet because I am not ready to out how bad my condition really is. It seems as if no one really cares if WE want kids.
-
Love is love is love is love. That is what kids are.
-
Too bad adoption is not an option for everyone. You have to have money, and so on and so on.. A close family friend went through that process... 6 years later, she finally got to adopt.
Not true. You can adopt through the Foster Care System in your state. You do not need to be rich, you just need to prove you can financially provide for a child. You also need to pass a background check. Adopting through Foster Care does not cost a thing.
After what we went through when we were trying to adopt a family member's child, i dont trust the system ONE BIT >:(
I'm sorry it didn't turn out well for you, how awful :cuddle;. Unfortunately, there are some horrible social/adoption workers out there and some horrible agencies.
-
Because every act we undertake throughout our whole lives is to sustain and enhance our existence, it is very difficult suddenly to shift perspectives, look at our lives from the outside, and ask whether we would wish we had never been born. That consideration requires a considerable effort of abstracting from the perspective within which we usually live. As soon as we find ourselves in the world, we are already equipped with a totally irrational, animalistic will to live at any price, which produces some truly hideous tragedies in hospital settings, where people whose lives are just torture cannot liberate themselves from their instinct to live, and cling irrationally to every possible moment of their oppressive existence.
But after 41 years of an extremely labile case of type 1 diabetes and 8 years on dialysis from a completely different disease, I can say without hesitation that I would have preferred never to have existed, even weighing in the balance all the good times and important experiences. My parents certainly would never have had me if they had had any idea of the medical tragedies that were to come.
The people who find themselves trying to defend having children who have a serious chance of being significantly sick by asking whether the child's life would be sufficiently horrible to make the child wish it had never been born should take a serious look at what they are asking. Is that any reason to have a child? because on your own estimate, without being able to consult the child as to its own wishes and assessment of the potential situation, you think that the child's irrational, animalistic drive to stay alive at any cost would just tip the balance in favor of wishing to live instead of preferring to die to escape the horrors of disease? Can you imagine sending out birth announcements to friends and relatives saying that you were betting little Jane or Billie would prefer life to suicide even if this meant dying in the agony of uremia?
-
Has there been nothing in the 41 years that made living worth while? I know you are extremely intelligent and educated--and everything seems black and white,but really, nothing has made it worthwhile? Or am I reading your post wrong? That is always easy to do. Posts don't always come across the right way. Why do you do dialysis? I am really trying to understand your situation. Just curious.
-
Selective infanticide, what a novel approach.
The prospects of future kidney failure is hardly a reason for eugenics!
Let's hear it for the old "Action T4" solution.
8)
-
Selective infanticide, what a novel approach.
The prospects of future kidney failure is hardly a reason for eugenics!
Let's hear it for the old "Action T4" solution.
8)
I totally get what your saying, but then is the answer to breed without care of consequence to the not yet alive child? Anything goes?
-
I'm not saying that nothing of value happened during my entire life, only that the negative impact of all my illnesses outweighed the benefit of the good or important things that occurred.
Even though I had a 30-40% chance of developing renal failure due to type 1 diabetes, in fact my renal function never declined at all because of diabetes, but was instead wiped out entirely in two weeks due to an attack of Wegener's Vasculitis, an auto-immune disease which affects about one in 100,000 people annually, and whose cause and cure are unknown. It was like side-stepping a bullet aimed directly at me and being hit by lightning instead.
-
It's not the length of the journey in life but rather what you do with it along the way.
8)
-
the answer is IT'S A PERSONAL CHOICE. no matter what that choice is, no matter what the outcome is. you make it, you live with it and shouldn't listen to what anyone else says about it, they don't get to make the choice for you, nor should they condemn you for the choice made.
-
the answer is IT'S A PERSONAL CHOICE. no matter what that choice is, no matter what the outcome is. you make it, you live with it and shouldn't listen to what anyone else says about it, they don't get to make the choice for you, nor should they condemn you for the choice made.
Maybe outsiders have no right to condem you, but what about when the kid condems you for having them , for knowing they would have the life they do?
I just can't swallow that its an unselfish act to have a child you KNOW has a huge risk to be sick...and that that is okay with so many people.
-
(alene writing)
This thread is both interesting and worrisome - who should have children and who should not. It is a very dangerous road to travel. But it is intriguing that it is a theoretical discussion - the opinions expressed deal with others, the children. And it opines that their lives are not worth living. I would question the wisdom of that point of view, but I don't have to. Instead, let's add some real sentiments from those that have already been born.
I ask this question in ignorance - I have no known sword over my head so I am heavily prejudiced.
To those with kidney failure, diabetes, or with the swords over their heads, would you have preferred that, had your parents known of a predisposition toward the development of these diseases in their offspring, that they had opted not to have children? ...for you not to have been born at all?
MattyBoy, I wish your niece/nephew a rich and rewarding life that she/he feels is definitely worth living without regard to any hardship she/he has to face.
I agree, this topic is interesting and a barn burner.
The answer to your question, since diabetes is not known in our family, and medical technology when I was born, I believe they would still have children. I had diabetes at age 7, but I didn't let it slow me down, I grew up feeling like anyone else, normal. As I got in my 20's and complications started to take effect, it got me down a little bit, but to me it was part of life. I didn't let my blindness slow me down and when kidney failure came into play, it slowed me down a little, but not out. I went to college with just having another medicalissue to take care of. With the advancements in technology and diabetes care, I would have kids and not think much about it. I just don't want kids because I would probably be put in jail for spanking the little brat out in public due to all this P.C. crap and not to mention the kid who took his parents to court to divorce them. WTF is with that, were does that little bugger get enough money to pay for a lawyer. Parents who breed idiot kids are the ones who should not have kids.
-
I would have kids and not think much about it. I just don't want kids because I would probably be put in jail for spanking the little brat out in public due to all this P.C. crap
I do not hesitate to spank my kids, no matter where I am, public or not. <-- This is a whole different subject though.
and not to mention the kid who took his parents to court to divorce them. WTF is with that, were does that little bugger get enough money to pay for a lawyer. Parents who breed idiot kids are the ones who should not have kids.
When your offspring does something "idiotic" and are considered "idiot kids" in yours or the publics eyes, at what age/point in their life do you go blaming the parent? I have seen many times, as I am sure you have yourself, where someone goes and does something either bad, or against the law, or just plain stupid... and the parents are always brought up and blamed. Why? I am sorry, but you can be the best parents out there and there is no guarantee your kid is going to end up perfect. Yes, there are people out there that were raised poorly and that affected the outcome of their life somehow, but that don't make it right to go around and blame every parent out there when something happens with their child. :twocents;
-
I just don't want kids because I would probably be put in jail for spanking the little brat out in public due to all this P.C. crap...
Amen!!! :bow;
-
I have a similar situation concerning cancer instead of kidney failure. SIL died in May from breast cancer (and yes, it is horrible watching someone die too early from a terrible disease) other SIL diagnosed in July with breast cancer. Now where does that leave their daughters and neices? Do the rest of the young women in our family have the test to see if they carry the gene---not get tested, roll the dice---never have children because they could pass this to the next generation?? It is a big conversation in our family, especially amoung the 20 and 30 yr olds. Life is such a gamble any way you look at it.
-
And to answer aharris2---with everything that has happened in my life - good, bad and ugly--I would want to do it all over again. I will add there were some horrible things that happened to me as a child and most of my childhood I dealt with major problems(not of my doing), but they made me who I am. My Mom once said to me "aren't you glad I didn't abort you?". I had a very interesting Mother!! Which brings up another point-all the women in my family end up with Alzheimers disease. Every woman : great-grandmother, grandmother, mother, aunt,cousins. I know that will be in my future, so maybe kidney failure will save me from that slow death, demeaning death.
-
All life is of course a gamble, but the issue we are discussing here is deliberately betting someone else's life on a gamble where you know in advance that the odds are against them. Add to that difficult situation the fact that you are that person's future parent, with a special duty to protect them from harm, and you really have a problem going ahead with the gamble.
I would not bet someone else's life on the unlikely prospect that medical science, after 50 years of stagnation, will suddenly start making huge leaps forward, just in time to cure whatever illness the future child is at risk for. When I first became diabetic the Professor of Endocrinology at Harvard Medical School, which was affiliated with the diabetes clinic where I was being treated, said to me, "You're lucky not to have to face the complications, since this disease will be cured in 5 to 10 years." That was in 1966.
-
My sister is having her first baby about a month from now. We don't if the baby is a boy or a girl as they are keeping as a surprise. There is an issue which my sister doesn't want to discuss and I can't stop thinking about it. My condition is caused by Alport's syndrome.
What I am worried about is that if my sister does indeed give birth to a boy then what will the future be like for him? Will it be a bed of roses or, in 20 yrs' time will I be giving my nephew advice on dialysis and all that goes with it?
And, in 20 yrs' time how would his parents answer him if he asks why they brought him into this world knowing that he could be ill?
Because it is Alport's syndrome, my sister was considered unsuitable as a donor to me due to the fact that she my get some symptoms of the condition herself in later life and it was best to keep her kidneys.
We are all excited about the new arrival to our family but I can't help but worry for him if it is a boy.
Hey MattyBoy, I think the thread is interesting but has gotten away a bit from your original post.
Your sister is nearing the end of her pregnancy and the last thing she probably wants to discuss now is the potential for a sick kid.
What's that saying? It's like closing the barn door after the cows are already out.
I hope you and your family can be supportive and enjoy this new baby. Hopefully focusing on today will keep the worry away.
There's another saying, “Worry never robs tomorrow of its sorrow, it only saps today of its joy.” Leo Buscaglia
I pray all goes well, my friend. :cuddle;
-
You are right Okarol-- MattyBoy, please let us know when this little one comes. And add pictures! Babies remind us that life goes on. Looking forward to hearing all the details when your niece or nephew arrives.
-
I sure opened a big can of worms with this thread!
Everyone is entitled to their opinions and there have been some interesting viewpoints posted here. I will keep you all informed about my niece/nephew and my camera is at the ready to take pics of the new member of my family which I will post here as soon as I take them.
Despite all that has been said in this thread, we are all looking forward to the baby's arrival and I am excited about becoming Uncle Matt! Part of me hopes it is a boy as I am looking for an excuse to play with those boys' toys when I am old enough to know better! And what better excuse is there than to say "It's my nephew's new toy."!
-
My brother uses my kids for all the new kids movies and chucky cheese. Enjoy Uncle Matt
-
Enjoy being an Uncle! I love being an Aunt to 9 children in my family, it's so much fun!!!! Have a blast with your niece/nephew and let us know when that little bundle of joy has arrived!
-
I have 2 nieces and 1 nephew. I don't get to see my nieces often, they live in another state, but I seen them a few months ago, and I am sending presents this week for their bday's. I will see my nephew next weekend and then again at Thanksgiving. Enjoy being an Uncle, it's great for getting to spoil kids. :)
-
No one has a crystal ball. Both sides of this debate deserve attention as it would be of personal choice risk or not.
-
I don't think anyone can or should comment on what someone wants to do with their own body. Regardless of all the dramas and things that life has threw at my family, i have lived life to the fullest and plan to continue doing so... with love and support from family and friends you can get through anything.
Matt your going to be a great Uncle.. Can;t wait to see pictures Uncle Matty.
Amanda
xxoo
-
You are not just doing something with your own body when it has massively negative implications for the quality of life another person has -- especially when that person is someone to whom you owe the highest legal and moral duty of protection. Nor is it nothing more than a personal decision, since the lives of two people (and more) are affected by it.
-
Matt, best of luck to your sister and her growing family, and enjoy being an Uncle! (my brother's name is Matt, and he sure loves being Uncle Matt!)
-
What if Steven Hawkings parents knew of his defects and decided to have him terminated? What about Christy Brown (The man in My Left Foot)? We just don't know how a person labeled disabled will live their lives, how they can enrich others lives. People with disabilites like Ray Charles and Stevie Wonder have done such amazing and wonderful things with their lives. THere's probably hundreds if not thousands more disabled people born that way or not ( I know Ray and Stevie weren't born with their problems.)
I can certainly understand why you choose not to have children and I respect that. But these children who were born disabled deserve every chance at life we can give them and their parents don't deserve scorn for bringing them into the world.
Donna :bandance;
A little off topic ...
I finally looked up Stevie Wonder's biography because I always thought he was blind since birth. This is from Wikipedia, but I have read it another site as well:
Stevland Judkins was born prematurely in Saginaw, Michigan to Lula Mae Hardaway on May 13, 1950. It is thought that he received excessive oxygen in his incubator which led to retinopathy of prematurity, a destructive ocular disorder affecting the retina, characterized by abnormal growth of blood vessels, scarring, and sometimes retinal detachment.
So apparently he was blind since immediately after birth.
-
Donna, it is important to keep in mind rationality requires that we base our decisions on what is probable, not what the occasional extraordinary anecdote may show is rarely possible. When deciding to have a child likely to be disabled, parents have to make the decision on the basis of what is likely to happen, not on what some extraordinary Helen Keller sort of individual was able to accomplish despite disability. And what is likely to happen for serioiusly ill people is that they will suffer terribly and live in frustration because they are able to accomplish much less than they know they otherwise could have. In Canada, a country with considerable social support structures for the disabled, 60% of the disabled who can work are unemployed -- they are not Stephen Hawkings or Beethovens.
In 1965, a surgeon was attempting to destroy a cancerous tumor growing on the pituitary gland of a diabetic patient who had serious complications of his disease. In the process, he burned the retinal tissue of the diabetic, and much to the surgeon's surprise, the patient's retinopathy cleared up soon afterwards. This mistake was the origin of pan retinal photocoagulation as the primary treatment for diabetic retinopathy. But the fact that something good came of that surgeon's mistake is no reason for surgeons now deliberately to start making mistakes all the time in the hopes of some rare chance of discovering a good side effect of the mistake! Yet, by your reasoning, the extremely slim chance of an extraordinary rather than a miserable life being caused by the decision to bring a disabled person into the world is similarly justified.
It is also important to note that Hawkings himself said that although his disease caused him to learn much and provided an impetus to focus more on his work, the misery of the disease was far worse than any benefit he gained from it.
I agree that all disabled children should be given every support and every chance to develop as much as they can, but I don't agree that we should deliberately risk imposing the misery of living with serious illness on people as yet unborn.