Thoughts and other trivia...

Monday, September 04, 2006

Tough call

Kabir and his wife Tara, both in their early forties, run a modest publishing business. They have two teenaged children, Maya (15) and Rehan (13). Their lives were disrupted one day when, following Maya’s deteriorating health and subsequent tests, they discovered that their daughter is terminally ill. According to the doctor, unless Maya receives a bone marrow transplant, she will not live for very long. When compelled to specify, the doctor reluctantly revealed that their daughter may only have as little as five years. Understandably, it was a terrible blow for them but the husband and wife put up a brave front and decided to immediately undergo the test that the doctor had ordered. There was every chance that their bone marrow, or at least the marrow from one of them, would match that of Maya’s. Unfortunately, it didn’t. But Kabir and Tara continued to feel optimistic because, as the doctor had told them, the best hope for Maya lay in a transplant from her sibling. But, as luck would have it, the marrow of her only brother Rehan also proved incompatible. This is when panic started to grip the husband and wife and they began to lose hope. On the advice of a few close friends and doctors, they started a search for a donor whose marrow would be a close match for Maya's. The search, surrounded by much poignant and supportive publicity, failed.

It was while she was playing the entire nightmare in her head one day that Tara remembered what the doctor had said: the best hope for Maya lay in a transplant from her sibling. She was suddenly seized by an idea, which she promptly revealed to her husband: they should have another child! Shocked at the suggestion, at first, Kabir dismissed it as a crazy idea and was reluctant to even consider it seriously. But, given the seriousness of their situation, he was quick to sense that this may be the only real chance that their daughter might have. He agreed to the brave, almost surreal gamble. Although the odds were stacked against them, Tara got pregnant at the age of 43. It was only after she got pregnant that doubts began to creep into Tara and Kabir's minds. What if the baby's marrow also proves to be unsuitable? After all, chances were only 1 in 5 that the unborn baby's marrow would match that of Maya's. Plagued by doubt and uncertainty, they decided to undergo a pre-natal test to determine the suitability of the baby's marrow. To their utter shock and disbelief, the test revealed that their worst fears had come true. The baby’s marrow was also incompatible with Maya's bone marrow!

They are shattered and unable to decide what to do. Should they opt for termination of pregnancy and try again immediately? Or, should Tara give birth to the baby anyway and try again after a year or so? It is an agonising decision for them and the opinion between husband and wife is divided. What should they do? What would be the right thing to do?


Their situation prompts a few questions:

  • Is it alright to conceive a child for the sole purpose of providing bone marrow for someone else?
  • Would it then be alright to breed for the purpose of harvesting other organs?
  • Are we not going too far in our quest for cures? Does this not commodify all life and reduce the process of parenthood to that of farming?
  • As a parent, shouldn’t one do everything possible to save one’s child?
  • Should parents of terminally ill children accept fate and allow the child to die without looking for a remedy?
  • Given the huge risks of mental and physical handicap in late conception, is it alright to go ahead and conceive, even if it is to save another life?
  • Would the parents be justified in opting for termination of pregnancy in this case?
  • Is a life that does not fulfill our needs expendable?
  • Does all human life have sanctity? Is it alright to violate the sanctity of one life for the sake of another?

It’s easy to offer opinions, advice and suggestions from the outside. From the luxury of that position, no problem seems big enough to handle and solutions come rather easily. Sure, being on the outside also affords us an objective overview of the problem at hand and, as a result, allows us to offer the most practical solution under the circumstances. But because we’re on the outside, we’re unable to see why the most obvious solution hasn’t occurred to those who are directly involved. And, so, sometimes, we sit in judgement and criticise them and the decision/s they have taken. We forget that, in their position and faced with their circumstances, we’re likely to be as clueless and just as likely to take the same decisions.

To tweak something I read a long time ago, it’s impossible to truly appreciate someone’s circumstances unless you step in their shoes and walk about in them. Having said that, it’s never easy to put yourself into hypothetical situations, especially if they’re as difficult as the one described above. It isn’t easy because even though you may be able to imagine yourself facing difficult circumstances, it isn’t always possible to imagine the real pressures and compulsions that come with those circumstances.

I’m not married and I don’t have kids but I’ve been through two difficult medical situations at home. So, I think I know what I would do if I ever found myself in Kabir’s shoes. Faced with such a problem, I think I know what my response would be. In Kabir’s shoes, I know, I wouldn’t have opted to have another child in the first place. Would you?

43 Comments:

Blogger Tabula Rasa said...

it's a well-documented phenomenon called "egocentric empathy gaps". meaning, it's hard to feel how someone else is feeling.

these cases are so subjective that there is really no right or wrong answer. and anything that you or i might state as what we'd do is only an opinion. the correlation between attitudes and behaviors could be anything here - nothing that you or i say may resemble what we might actually do.

(what a tragedy.)

1:48 pm  
Blogger J said...

Do you know how a frantic mother feels? She’d do anything to save her child. She’d probably even have 5 children.

@tabula rasa ~ I love that phrase "egocentric empathy gaps".

3:20 pm  
Blogger Szerelem said...

that story sounds familiar....i think i read of a couple in a similar situation a while back. Its just terribly tragic. But i aree with TR... i dont think there is any right or wrong answer and i dont think anyone is in a position to judge.

"it’s impossible to truly appreciate someone’s circumstances unless you step in their shoes and walk about in them" - To Kill a Mockingbird, no?
I think even if we do try and put ourselves in a situation as the one you mentioned we can only grasp at how helpless one must feel. So even ideas that we might have dismissed as ludicrous earlier seem worth trying out.

5:15 pm  
Blogger sattva said...

this is really sad. i think i would not have a 3rd chld, but if it really came to it, who knows.

5:57 pm  
Blogger GhostOfTomJoad said...

TR: Actually, I wasn't even suggesting that b'cos I completely agree that one shouldn't ever presume to know how someone is feeling. Besides, in the given situation, one can't feel very differently from everybody else. The point, really, is what you say later - in certain situations, there are no rights and wrongs. I wanted to talk about the very thin line that divides one from the other and how, in some situation, even that gets blurred.


J: I can understand that desperate situations call for desperate measures but, I wonder, if it'll be fair to the third (or, as you say, the fourth and fifth) child. I think the issue is far more complex.



Szerlem: You're right, it isn't for us to judge at all. And, I don't think there's a "right" answer for such a situation.

Now that you mention it, it may well be To Kill a Mockingbird...having said that, I think these words only mirror the sentiment but aren't exactly what is said. Either way, I'll burn in hell...it's one of my favouritest books!


Sattva: That's what I think too...at this point in time, when I'm not facing any real pressure, even I like to think that I wouldn't have the third child. But then, knowing me, I think that's what I'd do anyway.

7:00 pm  
Blogger km said...

Have seen a couple watch two of their children develop strange medical complications and die. The word "desperation" does not even come close to describing their predominant emotional state at the time.

Where does one go when one's prayers go unanswered? Is it right to give up? What is the difference between passivity and acceptance?

4:47 am  
Blogger Szerelem said...

"You never really understand a person until you consider things from his point of view... Until you climb inside of his skin and walk around in it". Its such a wonderful book.
But a situation like this is so existential that its useless to analyse any choice made.
This is just such a depressing post.

7:27 am  
Anonymous fact and fiction said...

Though emotional-survival situations always seem beyond analysis or logic, I think this is a very relevant post.

Even if you go beyond logic, there is the question of what is ethical, or what is it that you can do in a given situation that causes least harm to everyone concerned and gives maximum benefit.

This is where I've found 'doing your best without attachment' to be sane advice. If I had another child for no other reason but as a mere chance that it may save the one that is suffering, am I not already subjecting the coming child to, at least, suffering from my discrimination? I already have rejected the coming child for its own sake. How can I justify harming one being for the sake of another?

9:36 am  
Blogger GhostOfTomJoad said...

KM: That's really sad about that couple. Once is bad enough but to have it happen to you twice would be quite something.

But that's the whole point, isn't it? To accept that some things are beyond our control and that, sometimes, problems can get so far ahead of us that we can't fix them. I know, easier said and all...but the question is how far are we willing to go to find solutions to our problems? How far is too far?

Again, let me reiterate, we're not siting in judgement, trying to work out the rights and wrongs of such a situation b'cos, as I've said above to TR, sometimes the thin line dividing the two gets blurred.



Szerlem: "...climb inside his skin", that's it! :-) Thanks.



Fact and Fiction: I completely agree. However, it's hard to say what words like 'ethics' mean to someone caught up in such a situation. But, as I said, I completely agree with what you've said. The unborn child is every bit as important as the one who is ill.

I agree with your reasoning that follows the 'doing your best without attachment' statement but I’m not so sure about the statement itself. Attachment is the problem, isn’t it? And, being human and all, it’s almost impossible not to get attached to those you love. Therefore, I think, ‘acceptance’ is what we should aim for. And, as KM has suggested, acceptance is different from passivity. And, most certainly, it doesn’t imply fatalism.

10:59 am  
Blogger M (tread softly upon) said...

This post really shook me up. primarily because I found myself asking questions that I had no answers for. Because like you say there are no clear cut answers, no right or wrong here. Circumstances force people to take certain decisions. and that too depends on the person's invloved, their mental makeup and situations. Me, I don't know. I probably wouldn't have the courage to have another child for the slim chance of a match. But then situations can vary. And like i said I didn't have answers for most of the questions.

11:20 pm  
Anonymous Anonymous said...

From a rational perspective, it's not ok to conceive a child for the sole purpose of providing bone marrow for someone else, even if that someone else is your own child. But humans are prone to irrationality, more so when pushed to the corner. In this case, a mother is doing what she thinks is in the best interests of her child. Emotions do cloud judgement.

12:17 pm  
Blogger wildflower seed said...

Agree with Anonymous 100%. Emotions dont only cloud judgement, they drive it. "Rational perspective" - what's that?! :)

5:05 pm  
Blogger MockTurtle said...

TR hit the nail on the head. There's no right or wrong answer here. Everyone reacts in extremes under extreme duress.
This case warrants a closer look simply because as parents you would do anything to save your child, but when it comes time to harvesting marrow from one child to save another, it's possible that you will rethink your decision.
-MT

10:40 pm  
Blogger GhostOfTomJoad said...

M: Right. With situations like this, I guess you won't know how you're likely to react until it actually happens. But the one benefit of being on the outside, I think, is that it allows us to look at the ramifications of the various options open to those who're actually facing such difficult situations.



Anonymous: Sure, to be human is to be irrational :-) But, I wonder, just because it's a desperate mother trying to save her child, is it okay for her to suspend judgement? While he is doing everything she thinks she can to save her child, is she not being unjust to the unborn child? For one, it is being brought into the world for the wrong reasons (the right reason here, I think, would be to want to have that child) and, secondly, there is every chance that the child might be born with abnormalities. So, who's to say whose rights are greater...those of the sick child or the unborn one? Or, are they supposed to be equal?



VB: Oh, I completely agree with you and Anon. If we didn't let emotins cloud our judgement, we wouldn't be human :-)



MT: Like I said to TR, and elsewhere, there's no question of apportioning blame here. No one is sitting in judgement over the rights and wrongs of the action taken or not taken. According to VB and Anon and some others, emotions cloud our judgement and we act irrationally under stress. And I agree, that's how it is. But I also wonder if we can use that as an excuse, and I'm using the word 'excuse' lightly.

9:58 am  
Blogger Sonia said...

i would do ALLL i could to save my child. and if it means to have another baby, then i would try to. but i would NOT terminate the pregnancy, cos it's a BABY for God's sake! MY baby!

at least, that's what i think i'll do. but like that dialogue in To Kill a Mockingbird... you gotta be in their shoes.

12:17 pm  
Anonymous Anonymous said...

No. it is not ok to suspend judgement which is why, in the first place, I said it was not ok to have a child only for the sole purpose of hoping to find a cure. But in a situation such as this, judgement isn't suspended. It is what it is. Not making sense, am I? What I mean is, given the circumstances, this IS what a parent would think is best and hence it becomes his/her judgement/assessment of the situation. That certainly doesn't make it an excuse. Not by an yardstick. Tara did what she thought was the best thing she could in her capacity as a parent and given the limited options she had to save her dying child.
Regarding the chances that the unborn child might be born with abnormalities, well, I guess that can happen even if the reason for having the child is the right one (ie., genuine desire for having an offspring).

VB: Rational perspective is being able to look at things from a rational point of view. Got it?

1:33 pm  
Blogger that girl in pink said...

one of your questions asks, "As a parent, shouldn’t one do everything possible to save one’s child?"
for me, the clear answer to that is yes. i don't have children but i've met enough parents to know that the bond between them and their kids is stronger than anything else in the world.

for me, the ethical angle of the debate doesn't even matter. as a parent, my stand would be, "it's my child and i'll do what i can to save her life."

1:38 pm  
Blogger Tabula Rasa said...

have to jump in here.
anon: thanks for the clarification. VB's an economist.

2:52 pm  
Blogger GhostOfTomJoad said...

Sonia: You're right...since we're not in their shoes just now, we can only say what we think we'll do under the circumstances. In fact, I think our responses only reflect what we would like to under the circumstances but, as you said, unless we actually face that situation, we can’t say for sure. Who knows how we’ll react.


Anonymous: Sorry, I didn’t mean that you implied it is okay to suspend judgement. I was merely taking the argument further, assuming, as you said, that every parent would like to do the best for their child. But, by the same token, don’t parents have the same responsibility towards the unborn child? They have to do the best for their unborn child as well, right? In their shoes, I wouldn’t have wanted to have another child, I know, but I’m okay with their decision to have one to save their sick daughter. I start getting uncomfortable when it comes to how the unborn child is viewed, especially when it becomes clear that the two respective bone marrows don’t match. What happens then? Does the unborn child get sacrificed?

You’re right, even when the child is much desired and is being born under normal circumstances, it can still have abnormalities. No question about that b’cos things go wrong all the time. But how would you rate the chances of that happening to a young mother, who is, let’s say, below 35 years of age as against one who is over 40? As the mother gets older, especially into the 40s, the chances of the child being born with Down’s Syndrome increase manifold. So, why would anyone want to take such a huge risk?


That Girl in Pink: You say: for me, the ethical angle of the debate doesn't even matter. as a parent, my stand would be, "it's my child and i'll do what i can to save her life."

Sure, if that’s the way you feel... b’cos as a lot of us have said here, there’re no definite rights and wrongs in such a situation. But, wouldn’t you have the same and equal responsibility towards the child that you’re going to bring into the world as you feel towards the sick daughter? The larger question, I think, is how far are we willing to go to find solutions to our problems?


TR: well done, sir :-)

6:35 pm  
Blogger Cocaine Jesus said...

"it’s impossible to truly appreciate someone’s circumstances unless you step in their shoes and walk about in them"

damn straight. some of the smartest words you have ever written.

great read.

1:35 am  
Blogger GhostOfTomJoad said...

Cocaine Jesus: Thanks but, honestly, the thought is borrowed from Harper Lee, who says somethig similar in her book To Kill a Mockingbird. But, you're right, damn smart words!

10:26 am  
Blogger Shreemoyee said...

Aside from the topic, a way to help would be to register as a donor. Its a apretty simple procedure. That way the number of matches can be increased.

8:43 am  
Blogger GhostOfTomJoad said...

Shreemoyee: Absolutely right. I haven't done it with the marrow and other body parts and organs but I did pledge my eyes about 15 years ago. I think most people start thinking about this only when they're directly affected by a problem.

Thanks for stopping by :-)

5:40 pm  
Blogger upunge said...

hi from your description of the illness it sounds like walcot's syndrome and if that's the case they should be careful about having another child because this disease seems to be genetically transmitted. we had a couple here in mauritius whose child had this problem, which they were able to cure. then they had another child and he too had the same problem...

1:20 am  
Blogger GhostOfTomJoad said...

Upunge: First, let me just say that this isn't etirely true. It is based on something I read over 15 years ago in the Time or Newsweek. This is a part of a TV series I wanted to do around dilemmas, primarily issues that raise moral and ethical questions.

About Walcot's syndrome, odd, isn't it, that the couple's first child is free of it...especially when you're suggesting that it runs in the family.

Thanks again :-)

11:21 am  
Blogger upunge said...

i think it is a superb idea to do a tv series on ethical dilemmas. as children, we think that when we grow up, we'll become good people like the heroes in children's books. but as we grow up we realise the moral values we took for granted are like the potted tree in a play, representing the forest, or the painted background. there is no such thing as absolute good. you keep chosing between "this" kind of good and "that" kind of good. you start telling yourself: " in this situation, i took this moral path, so in similar situations later on, i'll make the same choice because the worst thing would be to have double standards, to be a closet conservative" so you start aiming at moral consistency, like as if you were dropping stones at each forked path to help you get out of the forest. ha but you could just as well end up in the gingerbread house with the witch. man this is a tv series the world needs so much to have.

11:08 pm  
Blogger upunge said...

i think it is a superb idea to do a tv series on ethical dilemmas. as children, we think that when we grow up, we'll become good people like the heroes in children's books. but as we grow up we realise the moral values we took for granted are like the potted tree in a play, representing the forest, or the painted background. there is no such thing as absolute good. you keep chosing between "this" kind of good and "that" kind of good. you start telling yourself: " in this situation, i took this moral path, so in similar situations later on, i'll make the same choice because the worst thing would be to have double standards, to be a closet conservative" so you start aiming at moral consistency, like as if you were dropping stones at each forked path to help you get out of the forest. ha but you could just as well end up in the gingerbread house with the witch. man this is a tv series the world needs so much to have.

11:08 pm  
Blogger upunge said...

sorry about the double post. i'd like to add some comments which i hope could be useful to the discussion:

(i) about the couple's decision to have a third child: unfortunately, parenthood IS becoming more and more like farming. there was a paradigm shift in the 50's when we moved from the idea that life was sacred to one where we gave all powers to parents to plan their family. i am not saying it was wrong, but with further progress in technology, we can expect things to get stranger and stranger in the future - tailor made babies, etc. during the enlightenment period, philosophers argued that man was rational, and that he should therefore have the right to elect his leaders. conservatives argued that man was prone to temptation, and would vote
for cruel and inept politicians, so that a feudal society was a more prudent choice, given its traditional restraints. democracy has won, but there have been hitlers being voted to power. the same will happen with the power to "shape" our families.

(ii) about our right to judge. as social beings, we daily make judgements on others, which we either keep to ourselves, or choose to voice out. in extreme cases like that of this couple, however, we land on the shores of a far continent: the land of tragedy. sophocles and euripides named it, camus is its frost bitten explorer. the antipode of this continent is the land of tabloid, relentlessly judgemental: "WOMAN BREEDS CHILD FOR ORGAN TRANSPLANT". criminals of all shades try to reach the shores of tragedy, for it is the abode of suspended judgement ( Macbeth: " I am a man more sinned against than sinning"). but it is a land hostile to human life. in the end, we need to pass judgment on the hamlets and oedipus of this world, even if judge and jury be coarse shopkeepers not fit to tie the sandals of the accused.

1:05 pm  
Anonymous silvermoon said...

Interesting post. This subject was the plot of the recent novel My Sister's Keeper by Jodi Picoult.

1:08 pm  
Blogger GhostOfTomJoad said...

SilverMoon: Really? As I said to someone above, I read a smilar story in the Time or the Newsweek magazine some 15 years or so ago. I adapted it to suit the concept of a television series I had in mind, which would revolve around some tricky dilemmas that one has to occasionally face in life.

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