Worried About Sister's Baby.

[angela515]

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.

[aharris2]

(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.

[paddbear0000]

(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.

[okarol]

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.

[KT0930]

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.

[paddbear0000]

There are many children now that need saving--those that need homes. There's always adoption.

[skyedogrocks]

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. 

[angela515]

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.

[paddbear0000]

There is a great deal of financial assistance out there if people want to adopt, including through employers and the government.

[angela515]

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.

[goofynina]

Pray for the best and prepare for the worse 

[glitter]

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 -

[skyedogrocks]

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.

[paddbear0000]

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!

[goofynina]

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 

[meadowlandsnj]

(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

[MattyBoy100]

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?

[okarol]

  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.

[paddbear0000]

(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

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.

[paddbear0000]

  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.

[kitkatz]

Love is love is love is love.  That is what kids are.

[skyedogrocks]

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  .  Unfortunately, there are some horrible social/adoption workers out there and some horrible agencies.

[stauffenberg]

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?

[paris]

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.

[Zach]

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.