Worried About Sister's Baby.

[glitter]

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.
 

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?

[stauffenberg]

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.

[Zach]

It's not the length of the journey in life but rather what you do with it along the way.
 

[thegrammalady]

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.

[glitter]

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.

[Chris]

(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.

[angela515]

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. 

[paddbear0000]

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!!!   

[paris]

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.

[paris]

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.

[stauffenberg]

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.

[okarol]

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. 

[paris]

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.

[MattyBoy100]

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."!

[lola]

My brother uses my kids for all the new kids movies and chucky cheese. Enjoy Uncle Matt

[skyedogrocks]

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!

[angela515]

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.

[Sluff]

No one has a crystal ball. Both sides of this debate deserve attention as it would be of personal choice risk or not.

[Amanda From OZ]

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

[stauffenberg]

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.

[KT0930]

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!)

[okarol]

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

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.

[stauffenberg]

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.