Should my cousins have been born?

Great Debates
1

Inspired by This thread/post exchange about antinatalism and birth defects.

I had three cousins with muscular dystrophy. Two of them are dead now. One lived a long time – almost made it to age 25. The youngest is still holding on, but he’s reaching the end. They were all dying much more quickly than the rest of us from the moment they were born. There was never any hope, short of a miracle cure, that they would survive much past adulthood. They were helpless, confined to wheelchairs, constantly beset by associated painful medical problems, and grew up knowing how short their lives would be.

They were born that way not because of freak luck, but because my aunt and uncle both carry the right genes which combine in such a way as to trigger this disease. Once they had one son with MD, they knew that any subsequent boys would also likely have it, and that any potential daughters (they did end up having one) would become carriers. They chose to continue having children regardless.

I love my cousins. It is not possible for me to say that I wish they had not been born. But of course that’s human thinking, not logical; if they hadn’t been born, I wouldn’t have known them to miss them. Yet I’d like to examine the arguments for and against the decision to go on having them in the first place without letting emotion cloud it too much.

For: They were good, sweet kids who made the most of what they had, and none of them wanted to die sooner than they had to. They experienced love and happiness as well as pain and despair. Their lives were like any human being’s life, just compressed, condensed. Human lives are inherently variable, and their experience may have made them statistical outliers, humanity is comprised of a whole set which includes the well and the sick.

Against: What the hell? Seriously…what the hell? I’ve never been able to understand how a couple could go on having kids knowing full well the conditions I’ve outlined above. Again, it’s not that they were born, or even conceived, and then the problem discovered – that was only true with the oldest. The parents knew their future children would probably have this terminal, crippling disability and chose to have three more anyway. However, I can’t articulate my feelings against well beyond that, so I wonder if this is, after all, the more irrational reaction.

I also wonder if odds would change anyone’s response. How likely does the emergence of such a terminal defect have to be before your answer changes?

By the way, please don’t be too hard on my aunt and uncle. Whatever motivated them, they have surely suffered for it enough now if their choice was wrong.

2

I can’t speak to their motives but if I were in their shoes, there is no way I would have kids. Adopt, yes.

3

I don’t think I can articulate my own thinking any more clearly than the OP can. After being told that it was certain any further boys conceived would suffer this condition, I cannot understand the need to continue conceiving children.

I can’t imagine any way to force people to conform to my thinking on this that wouldn’t be worse than the problem it alleged to solve, so I do not want to talk about any legislative cures. But, were I in their shoes, I couldn’t imagine trying to keep conceiving.

Just out of curiosity - the OP isn’t clear, did the couple in question stop conceiving after they had their daughter? That’s the only thing that would begin to make this comprehensible to me: That they wanted one child to provide a legacy, and kept going until they got that. But, for all I can see the appeal to that thinking, I believe it’s a monstrous reason to have a child - you’re defining your child’s role and life so completely that way, that if they choose not to have children, you’re going to feel it a betrayal. And no one should have to live with that kind of expectation.

4

Yeah, I couldn’t do it. Adopt, sure. Maybe seek out genetic counseling and a sperm donor if I wanted to be pregnant. But I couldn’t personally, knowingly, give birth to people facing the kind of life I wouldn’t want to lead.

And yes, the odds do matter to me, although I’m not sure I could give you an exact number in the dispassionate moment. When my daughter was on her way 17 weeks early, we were given 50/50 odds for survival (if I had a c-section, and 0% chance if I did not), and 70% of those who survived at her age would have no “big” long term disabilities. The first number was okay for me because I didn’t believe, given her neurological development, that she would suffer more dying outside than inside. The 70% seemed high enough for me at the time to try for it. Her problems were not HER problems, though - nothing genetic, no pollution of the gene pool having her around. She was only coming early because of an infection, not a defect, and every indication was that if she could make it at all, she’d be more or less okay.

And, to be perfectly honest, my plan was, if she faced significant neurological or physical damage, to let her die as painlessly as possible. Her doctors were okay with that. I wouldn’t have allowed her to be kept alive and suffering just so I’d have a kid.

So, 70% chance of “fine and normal” was okay for me to throw the dice (and, as it turned out, we won that round big time. She’s 3 now, and just perfect) But I don’t think it would be okay enough for me to do it again. It was better than 0% for an already conceived child, but I’d rather not conceive another if we had the same odds. There are just too many other perfectly acceptable alternatives these days.

5

They did not. The youngest boy is a few years younger than their one daughter. It went boy, boy, girl, boy. And if the girl has a child with a male carrier, her kids will also have MD. Also, you can’t imagine how messed up the girl is, but I’ll just say she’s already had her own kid taken away. Clearly growing up like that, watching your brothers die while your own body is healthy, is a traumatic experience all its own.

6

Ensign Edison, thanks for the information.

And my word, I feel for everyone involved, the girl especially, but I’m even more at a loss to imagine what the parents were thinking.

7

I still hope someone can help articulate just why it is we all feel it’s wrong even though there are many positives. It seems there must be some logical expression.

8

“feel” /= “logical”, Mr. Spock! :wink:

I think most of us not in that situation feel that it’s not right because we don’t see much of the positives. We’re still in a state of shock and eww at the physical deformities, the tremors the feeding tubes, the suction, the oxygen tanks - the medical maladies and equipment that accompany chronic illness that the people dealing with them every day just think of as one more part of their life. We focus on that, and on the pain and suffering and limitations, whereas the parents might focus more on the positive milestones, the joy and smiles and good things. We don’t have a balanced view, we have fear.

We see suffering, and we want to avoid that. They see joy, and they want to increase that.

9

Count me in the camp of one child is ok–I’m assuming because it makes me happy that they didn’t know the odds of having children with MD before the first child was concieved–but more than that is troubling. But people do it all the time. And I’m even more uncomfortable with any official attempt to discourage people from being able to make that choice than I am with people having more children likely to have genetic defects. A number of my friends from college seem to believe that godliness and having lots of children is linked. (None have more than 4 children at this time, although I don’t know how many plan more children).

I have friends whose third pregnancy resulted in a baby with a kidney defect (first two kids are healthy). Baby died shortly after birth. When I was talking to them before baby was born, they were in the position of still wanting a third child and probably a fourth-- so that they’d have another set of two kids who play together well-- but with some misgivings about whether they could go through multiple pregnancies with at least a 25% known chance of resulting in a baby with a kidney defect.

But they were blessed–or lucky if you prefer–post-natal testing found it was freak accident and not a predictable genetic defect. And so they were able to agree to resume trying to have a third and maybe fourth child after an appropriate time of healing/grieving.

10

I don’t understand the urge to have children anyway, so continuing to have children when you KNOW they will die young after living in horrible pain strikes me as nothing less than monstrous. (I’m sorry Ensign Edison, I realize you asked us to be gentle but I can’t think of any other way to express my thoughts on anyone that would do what they did)

11

But there are a million and ten ways to “increase that” without also increasing the suffering by having another child with serious birth defects. You can adopt an infant. You can adopt a special needs child that’s already here. You can use artificial insemination and cherry pick your eggs or whatever to produce a child that does not suffer from the birth defect.

12

Intending no offense, but I am glad that people such as ye have not been the rule; else there should be no humanity. Frankly, those children who died at age 7 or so are quite normal, and lucky if they live loner. This has been the rule for most of human history, and only we in blessed ignorance can royally and regally sniff our noses at the grubby roots and brevity of vitus humanitus.

13

imo, parents are supposed to want the best for their offspring. true or not, the parents as painted in the OP simply scream otherwise.

am not familiar with muscular dystrophy. i assume it’s something horrible based on reactions in the thread.

14

How likely does the birth defect have to be, to make the decision to conceive seem wrong? 75%? 50%?

15

Slight hijack, but IIRC the subject of the documentary The Boy Whose Skin Fell Off was pretty open about wishing he’d never been born and making sure prenatal tests were available so no one else had to have a child in his condition.

16

Me personally, I wouldn’t have kids. In fact, I would probably get snipped upon hearing I had the gene to keep it out of the gene pool altogether.

Take this a step further, I would terminate a birth if the child had Dystrophic Epidermolysis Bullosa. This is a disease where the skin just falls off (see the documentary "The Boy Whose skin Fell Off). It’s very painful and affords nothing that resembles a life except daily torture.

17

I think the cases where it’s that bad are easier calls to make. My cousins were glad to be alive and enjoyed their lives at times. That complicates the matter.

18

No, it doesn’t complicate the matter; it uncomplicates it. Life is not measured in years, and they certainly knew joy in the years they had. There are millions of people on this planet living under horrible conditions, who never (or rarely) are “glad to be alive,” but who can say that they shouldn’t have been born?

I think your aunt and uncle did the best they could under horrible circumstances, and I find it difficult to be judgmental toward them, not having walked in their shoes.

19

Were your cousins ever directly asked this question? If so, what was their response? If not, what’s your best guess as to what their response would have been?

Did they make some positive contribution to the world, say in art or in science or just by brightening the lives of those around them? Would it have been better if someone like Stephen Hawking had never been born?

Were they a burden on those around them or on society as a whole? Is it a concern that they, with their special needs, consumed resources that were urgently needed elsewhere?

It bothers me to evaluate their lives’ worth by comparing them to “normal” humans. Wouldn’t all of us be considered severely handicapped if there also existed superhumans with much greater longevity and physical and mental ability and less susceptibility to pain and injury than we have? Would their mere existence render our lives less worth living?

20

The thing is, they created the circumstances themselves. I agree about not being too hard on them, but did they have the right to create those horrible circumstances intentionally and repeatedly?