Don't you feel guilty? Having kids when you know you have PKD?

[daddyrat50]

  :Kit n Stik;First of all i don't regret having a only son that inherited PKD from me. But hindsight if i had knew that i had that carried that genetic malfunction i probably would not have fathered no kids. The real only way to stop PKD in familys is skip a generation or at least thats what i have read about it. What makes it worse for me is to know my son will have to deal with this one day and i am worried he will not be as old as me before he gets to the point of dialysis because he doesnt take care of himself.What really upsets me more than the disease itself is i am an adopted child and didnt have no medical history on biological family. But did have history that i had brothers and sisters and that always made me wonder if thats reason my biological family gave me up for adoption. I wish that adoption agencys would make it mandatory that biological family medical history be disclosed to the adoptive parents.

[Charlie B53]

It really hasn't been that long that the medical field has learned as much as it has so far.

Many families have had a history of dying young, it just was.   No one knew the causes as we now are learning.

My Father passed away at 59, after well over 20 years of heart problems.   Sure his weight must have been a contributing factor to the onset of coronary disease, but he was always physically active though not of the sorts that would raise and maintain an elevated heart rate.  He was strong.   I am already 3 years older than he, and have been on PD all three of those years, so I consider myself very fortunate to still be here.

Family history MAY be a benefit, but we cannot rely on history alone to determine who we are and how we should live our lives.    You can only do what YOU feel is best for YOU.   And of course take care of our children as best we can, which is to teach them WELL.   Teach them as early as possible to take care of themselves, how their habits can and willl contribute to their health.

Kidney friendly diet, proper physical exercise can make a huge difference in the quality of health and most likely length of lifetime.

Just my 2 cents.

Charlie B53

[Simon Dog]

Family history MAY be a benefit, but we cannot rely on history alone to determine who we are and how we should live our lives. 

There is a huge difference between having a kid when your family has a history of early heart disease, cancer, etc. and having one when you know there is a 50% chance of any offspring having a specific disease like PKD or Huntingtons.

That being said, I offer no opinion or judgement on parents making that choice.

Family history MAY be a benefit

There is no "may" when you are dealing with a 50/50 chance of inheriting the PKD or Huntington's gene.   Family history is a very strong predictor, and an absolute predictor you are taking a very big risk.

[kristina]

I did not know that I had PKD when I had my kids as I was adopted and did not have a medical history on my parents.

But some people still have kids knowing that they each have a 50% of having the disease. I was thinking that if  I knew about the PKD would I still have had kids? I honestly don't know.

Someone told me once that if we do not have kids because of a history of diabetics, heart problems, cancer, obesity and other illnesses that may be heridiraty (spelling sorry) no one would be having kids.

What is your take on this?

Hello Del,
My kidneys first failed in 1971 and afterwards they recovered a little of their function again without me needing any dialysis until 18 months ago ...
... Early on I was told by a Professor of medicine that it would not be advisable for me to have any children because he said that if people in kidney-failure have children, these children are either born with severe health-defects, or these children develop severe health-problems/defects later in life...
Having been warned about these terrible dangers at a very young age, I could never justify in my mind the idea of having any children and after thinking it over thoroughly,  I have never ever allowed myself to entertain this idea ... 
... and after discussing it with my husband -  when we were getting serious about our future together - we both agreed and were contend with the idea of not to have children ...
... We both have not regretted our decision because over the years we have met too many kidney-patients with health-problem-children... and it hurt very much and was very painful to witness their suffering ...
... I must also mention that for me it was a very difficult and hard decision, because I really adore children and I get on with them extremely well ...
Best wishes from Kristina.

[Athena]

Family history MAY be a benefit, but we cannot rely on history alone to determine who we are and how we should live our lives. 

There is a huge difference between having a kid when your family has a history of early heart disease, cancer, etc. and having one when you know there is a 50% chance of any offspring having a specific disease like PKD or Huntingtons.

That being said, I offer no opinion or judgement on parents making that choice.

Family history MAY be a benefit

There is no "may" when you are dealing with a 50/50 chance of inheriting the PKD or Huntington's gene.   Family history is a very strong predictor, and an absolute predictor you are taking a very big risk.

I don't have an opinion on whether anyone should or shouldn't but I totally agree with Simon about the need for each person to be fully aware of what a 50% chance exactly means.

[Charlie B53]

50% is half.   For the sake of arguement say you have TWO children, one may be fine, the other may have the trait.   But this is not always true.   BOTH may have the trait.  Then again, BOTH may be fine.   We can never know in advance.   Granted, we now have fetal testing, and some people do believe in abortion, so it is possible to NOT have the child with the trait.  If you choose.

Then again, with the advances in medicine it MAY be possible to develop a lasting treatment before a child comes of age that the trait becomes a problem.

There is so much we do not know, yet.

These are the types of personal decision that each must make on their own, not subject to decision by committee.

Most every method for the prevention of conception has a failure rate.   How do you handle these?   This brings up that abortion debate, which I do not want to get involved in.  That is another of those personal decisions, NOT subject to decision by committee.

Who are WE to dictate how another should live their life?   As long as their life is not negatively affecting another being.

[kristina]

I did not know that I had PKD when I had my kids as I was adopted and did not have a medical history on my parents.

But some people still have kids knowing that they each have a 50% of having the disease. I was thinking that if  I knew about the PKD would I still have had kids? I honestly don't know.

Someone told me once that if we do not have kids because of a history of diabetics, heart problems, cancer, obesity and other illnesses that may be heridiraty (spelling sorry) no one would be having kids.

What is your take on this?

Hello Del,
My kidneys first failed in 1971 and afterwards they recovered a little of their function again without me needing any dialysis until 18 months ago ...
... Early on I was told by a Professor of medicine that it would not be advisable for me to have any children because he said that if people in kidney-failure have children, these children are either born with severe health-defects, or these children develop severe health-problems/defects later in life...
Having been warned about these terrible dangers at a very young age, I could never justify in my mind the idea of having any children and after thinking it over thoroughly,  I have never ever allowed myself to entertain this idea ... 
... and after discussing it with my husband -  when we were getting serious about our future together - we both agreed and were contend with the idea of not to have children ...
... We both have not regretted our decision because over the years we have met too many kidney-patients with health-problem-children... and it hurt very much and was very painful to witness their suffering ...
... I must also mention that for me it was a very difficult and hard decision, because I really adore children and I get on with them extremely well ...
Best wishes from Kristina.

P.S. This medical Professor pointed out to me that it is completely irrelevant whether or not the kidney-disease we suffer from (in my case: Chronic Proliferative Glomerulonephritis)
is inheritable or not... or whether it involves the male or the female who is suffering from a kidney-disease...
Why?
In his answer he pointed out, that our kidneys are extremely vital organs in our body and if they are "faulty" because of a kidney disease etc.,
this medical faultiness - as a result - "promotes" the fact that a child is to be depleted of vital "ingredients" from the very start after the "creation" ...
... and ...  he also pointed out that because of this, there is unfortunately no "pretty" medical outcome at all ...
Kristina.

[Athena]

Like I said Charlie, I am not proferring an opinion on whether someone should or shouldn't have a child. All I am saying is that a 50% chance has to be clearly understood logically and rationally. When I was in my younger years, I thought little about stats and tended to have thought processes that were unrealistically optimistic. I was always going to be one of the lucky ones in all things under consideration. This is a common characteristic of younger people.

[Simon Dog]

50% is half.   For the sake of arguement say you have TWO children, one may be fine, the other may have the trait.   But this is not always true.   BOTH may have the trait.  Then again, BOTH may be fine. 

Holy binomial distribution batman.

Alternatively put, it you have two children you only have a 25% change of avoiding the PKD curse, and it drops to 12.5% or 1 in 8 for three kids.

Who are WE to dictate how another should live their life?   As long as their life is not negatively affecting another being.

A credible argument can be made that having a kid with PKD is negatively affecting that being.

Something to think about - if everyone with the PKD gene stopped reproducing, the disease would be nearly wiped out in a generation.

If I had PKD, I would sooner send my wife to an IVF or donor clinic than impregnate her.  My kid (came with the marriage) is a donor kid, and that has not interfered with my family relationships at all.  In fact, the fact that she was "bred" (vial selected from a catalog) may be why she turned out smart enough to be able to invite me to her Harvard graduation earlier this week.   I do not feel in the slightest bit deprived or less fulfilled because my family came from a non-traditional mechanism.

[kristina]

Like I said Charlie, I am not proferring an opinion on whether someone should or shouldn't have a child. All I am saying is that a 50% chance has to be clearly understood logically and rationally.

... The tragedy about having or not having children despite a chronic incurable kidney-disease is unfortunately not connected to logic and/or rational thinking ...
...  but this decision is predominantly connected to feelings & emotions  and the often hopeless hope that the child would be healthy despite gloomy medical predictions  ...
Kristina.

[kristina]

. 


 My kid (came with the marriage) is a donor kid, and that has not interfered with my family relationships at all.  In fact, the fact that she was "bred" (vial selected from a catalog) may be why she turned out smart enough to be able to invite me to her Harvard graduation earlier this week.   I do not feel in the slightest bit deprived or less fulfilled because my family came from a non-traditional mechanism.

... Does that not indicate a frightening development of "human selection" ?

[Simon Dog]

... Does that not indicate a frightening development of "human selection" ?

Perhaps, but that is the nature of sperm banking.    The buyer gets the medical and intellectual history of the donor.

An interesting eugenic example of what happens with sperm nbanking is redheads - some banks do not buy sperm from redheaded donors since there is little demand for that product.

Interesting ethical questions.   Few, if any, would argue that it is reasonable for sperm buyers to reject product like sperm that bears a 50% change of Huntingtons (makes PKD look like a common cold), but what about selecting for intelligence; height; hair color; etc.?  Should a buyer be obligated to select sperm from a population not screened for intelligence, just to give stupid sperm equal opportunity?   What about selecting sperm to match the race of the recipient?

As to "evils" - I rank birthing a kid with PKD or Huntingtons as more evil that selecting sperm out of a catalog to get a smart, healthy kid.

For those with PKD the choice is tri-state, not binary.    It's don't have kids; have kids the natural way; or find some alternative way to build a family dynasty.

[KarenInWA]

P.S. This medical Professor pointed out to me that it is completely irrelevant whether or not the kidney-disease we suffer from (in my case: Chronic Proliferative Glomerulonephritis)
is inheritable or not... or whether it involves the male or the female who is suffering from a kidney-disease...
Why?
In his answer he pointed out, that our kidneys are extremely vital organs in our body and if they are "faulty" because of a kidney disease etc.,
this medical faultiness - as a result - "promotes" the fact that a child is to be depleted of vital "ingredients" from the very start after the "creation" ...
... and ...  he also pointed out that because of this, there is unfortunately no "pretty" medical outcome at all ...
Kristina.

I question this statement, for the simple fact that there have been many kidney patients who have been able to father/carry in pregnancy babies that come out to be healthy children and on up to healthy adults. Blanket statements are just that - blanket statements. Nothing is all true in any situation when it comes to health.

KarenInWA

[Charlie B53]

Even using a sperm bank there is no guarantee of perfect health.  Granted there may be a certain % of the likelyhood of better health, but there cannot be a guarantee of no recessive gene hiding within.

Arguements can be made both for and against 'selective' breeding.   All I can say is that is another of those personal decisions,   NOT subject to selection be committee.   It would be a very different world if the Government had a section that decised exactly who gets impregnated by whom.    Perhaps if some were selected to live for generations aboard a spacecraft.  Taking many generations before arriving at any given destination.   It could be a very interesting experiment.   But I doubt it would ever happen here on Earth.   Too many variables.   People are not always rational, especially when it comes to selecting members of the opposite sex.    We 'fall' in love.   We do not use our brain.   At least I'm pretty sure that I didn't!

[Athena]

Simon Dog, what an interesting perspective you provide. Thank you. I find myself agreeing with you 100% percent. Having observed a couple who have 2 children who are born with various kind of congenital abnormalities and disorders and having watched the mother of those children fall deeply into depressive illness, I wouldn't wish that on anyone.

Do you have Huntington's as well as PKD?

(I can't help asking - why isn't there much demand for redheads?)

[kickingandscreaming]

(I can't help asking - why isn't there much demand for redheads?)

I agree.  I used to have auburnish hair (it's now drab brown/grey as I age) and I always wanted to be a real red head.  I even used eyebrow pencil as a kid to pencil on freckles (more than I already had).  So it seems strange to me that they are discriminated against.  Does red headedness come with some payload of other problems? Or is it merely an aesthetic issue?  I know it's a recessive trait.  I come from a Russian Jewish background and my whole family except for me has/had black hair.  And there I was as a strawberry blond kid later darkening to red-ish.  I learned that there is a "thing" that happens in that ethnic group where black-haired men can have red beards and there is the occasional red headed child.  Genes are funny that way.

[SutureSelf]

(I can't help asking - why isn't there much demand for redheads?)

I agree.  I used to have auburnish hair (it's now drab brown/grey as I age) and I always wanted to be a real red head.  I even used eyebrow pencil as a kid to pencil on freckles (more than I already had).  So it seems strange to me that they are discriminated against.  Does red headedness come with some payload of other problems? Or is it merely an aesthetic issue?  I know it's a recessive trait.  I come from a Russian Jewish background and my whole family except for me has/had black hair.  And there I was as a strawberry blond kid later darkening to red-ish.  I learned that there is a "thing" that happens in that ethnic group where black-haired men can have red beards and there is the occasional red headed child.  Genes are funny that way.

While this is an excellent archival topic to retrieve from 2009, comments, such as this for example, have strayed a great deal from the original discussion started by Des.  Please, either stay on topic to her thoughtful issue or if you wish to continue off topic, start a new thread under the appropriate discussion topic.   Thank you. ~ SutureSelf

[Michael Murphy]

I don't think I have PKD I think a list of staph infections I had as a child is the probable cause of me having ESRD.  Scarlet Fever, impatago, repeated strep throats.  The only way I can look at this question is would I rather not have been born because I go to dialysis. Hell no, I had a job I loved for 45 years, really enjoyed my self, married at 42, looking back life was a hoot.  Besides if dialysis was such a burden I would stop going. If my life was unbearable I would just stop going to dialysis.  However while dialysis sucks rocks there is still much to live for.  If I had a kid and he was going to end up on dialysis I would recommend living every day doing what you love. 

[kristina]

... Does that not indicate a frightening development of "human selection" ?

Perhaps, but that is the nature of sperm banking.    The buyer gets the medical and intellectual history of the donor.

An interesting eugenic example of what happens with sperm nbanking is redheads - some banks do not buy sperm from redheaded donors since there is little demand for that product.

Interesting ethical questions.   Few, if any, would argue that it is reasonable for sperm buyers to reject product like sperm that bears a 50% change of Huntingtons (makes PKD look like a common cold), but what about selecting for intelligence; height; hair color; etc.?  Should a buyer be obligated to select sperm from a population not screened for intelligence, just to give stupid sperm equal opportunity?   What about selecting sperm to match the race of the recipient?

As to "evils" - I rank birthing a kid with PKD or Huntingtons as more evil that selecting sperm out of a catalog to get a smart, healthy kid.

For those with PKD the choice is tri-state, not binary.    It's don't have kids; have kids the natural way; or find some alternative way to build a family dynasty.

Hello Simon,
 ...The reason for my above comment is based on historical events, where a frightening, terrifying development of "human selection" took place, based on the idea of "Lebensborn e.V." (literally: "Fount of Life") which was an SS-initiated, state-supported, registered association with the goal of raising the birth rate of very healthy & clever children of persons classified as "racially pure, very healthy and clever", all based on Nazi racial hygiene and Nazi health ideology  ... "Fount of Life" encouraged anonymous births by unmarried healthy women and mediated adoption of these children from 1935 - 1945  and about 60% of the mothers were unmarried and they were all medically checked-up and medically "cleared", before being "selected" to "multiplie", as Geoffrey Chaucer would have put it ...
Kristina.

[kristina]

P.S. This medical Professor pointed out to me that it is completely irrelevant whether or not the kidney-disease we suffer from (in my case: Chronic Proliferative Glomerulonephritis)
is inheritable or not... or whether it involves the male or the female who is suffering from a kidney-disease...
Why?
In his answer he pointed out, that our kidneys are extremely vital organs in our body and if they are "faulty" because of a kidney disease etc.,
this medical faultiness - as a result - "promotes" the fact that a child is to be depleted of vital "ingredients" from the very start after the "creation" ...
... and ...  he also pointed out that because of this, there is unfortunately no "pretty" medical outcome at all ...
Kristina.

I question this statement, for the simple fact that there have been many kidney patients who have been able to father/carry in pregnancy babies that come out to be healthy children and on up to healthy adults. Blanket statements are just that - blanket statements. Nothing is all true in any situation when it comes to health.

KarenInWA

Hello KarenInWa,
... I know myself how the truth can be hurtful ...  sometimes ... 
... at the same time it could be that you are right ... after all ...
... I only mentioned here my very own - and very personal - reasoning,
why I never had the nerve to take on such an enormous gamble and have a child
despite "my" incurable kidney disease (Chronic Proliferative Glomerulonephritis)
and to find out "practically" whether this Professor is right ... or not ...
... I know myself well enough to know, that if I would have had a sick and disabled child
as a result of taking "the gamble", I would have never ever been able to forgive myself  ...
Kristina.

[Athena]

... Does that not indicate a frightening development of "human selection" ?

Perhaps, but that is the nature of sperm banking.    The buyer gets the medical and intellectual history of the donor.

An interesting eugenic example of what happens with sperm nbanking is redheads - some banks do not buy sperm from redheaded donors since there is little demand for that product.

Interesting ethical questions.   Few, if any, would argue that it is reasonable for sperm buyers to reject product like sperm that bears a 50% change of Huntingtons (makes PKD look like a common cold), but what about selecting for intelligence; height; hair color; etc.?  Should a buyer be obligated to select sperm from a population not screened for intelligence, just to give stupid sperm equal opportunity?   What about selecting sperm to match the race of the recipient?

As to "evils" - I rank birthing a kid with PKD or Huntingtons as more evil that selecting sperm out of a catalog to get a smart, healthy kid.

For those with PKD the choice is tri-state, not binary.    It's don't have kids; have kids the natural way; or find some alternative way to build a family dynasty.

Hello Simon,
 ...The reason for my above comment is based on historical events, where a frightening, terrifying development of "human selection" took place, based on the idea of "Lebensborn e.V." (literally: "Fount of Life") which was an SS-initiated, state-supported, registered association with the goal of raising the birth rate of very healthy & clever children of persons classified as "racially pure, very healthy and clever", all based on Nazi racial hygiene and Nazi health ideology  ... "Fount of Life" encouraged anonymous births by unmarried healthy women and mediated adoption of these children from 1935 - 1945  and about 60% of the mothers were unmarried and they were all medically checked-up and medically "cleared", before being "selected" to "multiplie", as Geoffrey Chaucer would have put it ...
Kristina.

Kristina, I don't think it is fair to lump the enormity of the abuses of the Nazi regime on someone who is trying their best to find a solution within existing ethical and lawful medical practices. The uncomfortable truth is that the Nazi regime actually made some new medical discoveries which have benefited mankind greatly since then (this is something one hears from time to time). Bringing everything back to what the Nazis once did generally isn't very helpful.

[kristina]

 The uncomfortable truth is that the Nazi regime actually made some new medical discoveries which have benefited mankind greatly since then (this is something one hears from time to time).

Oh là là Athena ! You are making quite a statement here !
But ... I am afraid I cannot agree with you on that ...
Kristina.

[kristina]

... Does that not indicate a frightening development of "human selection" ?

Perhaps, but that is the nature of sperm banking.    The buyer gets the medical and intellectual history of the donor.

An interesting eugenic example of what happens with sperm nbanking is redheads - some banks do not buy sperm from redheaded donors since there is little demand for that product.

Interesting ethical questions.   Few, if any, would argue that it is reasonable for sperm buyers to reject product like sperm that bears a 50% change of Huntingtons (makes PKD look like a common cold), but what about selecting for intelligence; height; hair color; etc.?  Should a buyer be obligated to select sperm from a population not screened for intelligence, just to give stupid sperm equal opportunity?   What about selecting sperm to match the race of the recipient?

As to "evils" - I rank birthing a kid with PKD or Huntingtons as more evil that selecting sperm out of a catalog to get a smart, healthy kid.

For those with PKD the choice is tri-state, not binary.    It's don't have kids; have kids the natural way; or find some alternative way to build a family dynasty.

Hello Simon,
 ...The reason for my above comment is based on historical events, where a frightening, terrifying development of "human selection" took place, based on the idea of "Lebensborn e.V." (literally: "Fount of Life") which was an SS-initiated, state-supported, registered association with the goal of raising the birth rate of very healthy & clever children of persons classified as "racially pure, very healthy and clever", all based on Nazi racial hygiene and Nazi health ideology  ... "Fount of Life" encouraged anonymous births by unmarried healthy women and mediated adoption of these children from 1935 - 1945  and about 60% of the mothers were unmarried and they were all medically checked-up and medically "cleared", before being "selected" to "multiplie", as Geoffrey Chaucer would have put it ...
Kristina.

Kristina, I don't think it is fair to lump the enormity of the abuses of the Nazi regime on someone who is trying their best to find a solution within existing ethical and lawful medical practices. The uncomfortable truth is that the Nazi regime actually made some new medical discoveries which have benefited mankind greatly since then (this is something one hears from time to time). Bringing everything back to what the Nazis once did generally isn't very helpful.

Oh là là Athena ! You are making quite a statement here !
But ... I am afraid I cannot agree with you on that ...
Kristina.

[Simon Dog]

Kristina, I don't think it is fair to lump the enormity of the abuses of the Nazi regime on someone who is trying their best to find a solution within existing ethical and lawful medical practices. The uncomfortable truth is that the Nazi regime actually made some new medical discoveries which have benefited mankind greatly since then (this is something one hears from time to time). Bringing everything back to what the Nazis once did generally isn't very helpful.

There is an interesting paper on this very subject at http://www.jewishvirtuallibrary.org/jsource/Judaism/naziexp.html.

I am reminded of the time the Tufts Vet School got approval from their IRB to do an experiment where they broke two legs on healthy dogs, and then used different repair techniques on each for the sake of comparison.  That one still bothers me.  Dogs deserve better.

[Charlie B53]

Unfortunately the medical field has a long history of animal abuse all in the name of 'Science'.   I have to agree, the practice is barbaric.And it is still being done today behind closed doors as the pblic would raise quite a stir if/when they became aware of some of the testing being done.

There are many laws preventing much of these types of tests on humans.   Bizarre, as a human may understand some of the risks yet be willing to subject oneself to them for a price.   The animals are never given a choice.

Unfortunately we are slow to develop better methods of testing.