Worried About Sister's Baby.

[MattyBoy100]

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.

[lola]

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.

[angela515]

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. 

[stauffenberg]

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.

[George Jung]

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.

[Amanda From OZ]

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.

  ...........................

[glitter]

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.

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 

[lola]

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.

[Mimi]

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.
 

Love, Mimi

[angela515]

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.

[brenda]

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  .

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. 

[stauffenberg]

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.

[angela515]

 

[Black]

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.

[Jannie]

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.

[meadowlandsnj]

 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

[meadowlandsnj]

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

[glitter]

 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

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

[paddbear0000]

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.

[angela515]

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.

[thegrammalady]

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

[glitter]

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.
 

[skyedogrocks]

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. 

[angela515]

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.

[glitter]

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.