March 6, 2007

It's not that easy, is it?

Last fall, I read My Sister's Keeper by Jodi Picoult - in short, it's about a girl who was conceived to provide a donor match for her older sister who had leukemia. The book was an excellent, compelling read and provided for a good, thought-provoking book club discussion. It's always easy to roll abstract ideas in your brain isn't it? Even when the questions AND the answers are in varied shades of grey, it doesn't matter, because it's still just theoretical, right? Bring on more wine! Let's discuss! Until a collegemate's son is diagnosed with a rare - wait - make that a very, very rare blood disorder and needs a bone marrow transplant, that is.

My collegemate's sister told me about a week ago what was going on. This boy is 20 months old and has a disorder that renders his immune system fairly useless. After the age of 7, his rates of survival start going down, down, DOWN if he doesn't get a bone marrow transplant. Also, this collegemate is Indian, so her son's chances of a match are even further reduced. Last Saturday, they held a Donor Drive at the Indian temple and we went to it so that X could sign up for the testing. But we didn't do the swabs for Arun. For X, the decision was simple - absolutely not. For me, it was a little trickier because obviously, I have a loose connection to the boy's mother (we weren't good friends as such while in college, but had classes together and saw each other socially). However. I am also a mother and when confronted with the question "What if Arun was a match?". My immediate, heartfelt internal response was "No one's sticking needles in my baby for a bone marrow harvest. No one." I am still oddly ashamed of my initial, gut reaction because of course, my Higher Brain Function started to take over and ponder the selfishness of my reaction - a little boy's life is at stake here, after all. I've even hesitated to post about it, even though it's been weighing on my mind for well over a week now. I guess if Arun were older, say at least 8 or so, and I could actually talk to him about what was going on, maybe it would be a different story. Damn. I wish I were some grandiose writer that could make heads or tails of this and could finish off with a Wham!Bam! Conclusion.

Unfortunately, I can't.


Bethany said...

I think I would be having the same reaction as you. That helps, huh?

Md. Macaca said...

I don't think even a grandiose writer would have had an answer for that. It's tough stuff, but I totally get it, even though I'm not a parent. i feel that same sort of protectiveness over my sister, even though she's 16. It's amazing how fierce that protectiveness can be.

Goofy Girl said...

Ditto gut reation is is "NO"...make that "Hell NO". However, you mentioned "Sister's Keeper". Wonder if you would be second-guessing if you hadn't read that book?

My thoughts go out to your friend. 20 months old. That's much to young to be dealing with something so serious.

flybunny said...

Poor baby, that is so tough to deal with.

I would react the same way. I think no matter what the age or situation it is a gut wrenching decision.

Just thinking out loud here in light of the fact that you read the book (which by the way, I loved and am so sorry I didn't have anyone to discuss with me when I read it) - what would be your reaction if it were between your own kids - would the answer be b&w or hazy shades of grey?

Cagey said...

Goofy Girl,
re: having just read My Sister's Keeper - actually, I'm not really 2nd guessing, but just feeling sorta shitty because either answer sucks ass. I think it's easier to say "hell no" if you don't know the person - while I wasn't good friends with my collegemate, I was good friends with her two sisters and the history with the family is a little complicated (I realize now I didn't really explain that in the post). I primarily mentioned the book because it was eerie to just have read the book and now be looking at it in a real life situation. It made me realize how nice it is to discuss something theoretically over a glass of wine, but real life isn't so pat and perfect.

I can't even imagine having to make that decision for TWO children. My collegemate is pregnant (she found out about her son's disorder just after after she found out she was pregnant). However, the baby is not a match and is a girl (the disorder only expresses itself in males). Apparently, they may consider having a 3rd child in the same manner as the girl in My Sister's Keeper, though.

Mojavi said...

man....... i can't even imagine how that mom is feeling. btw this word security thing bites *wink* is that a q or a g

alyndabear said...

It's a tough situation, but ultimately it's natural for you to be protective of Arun and want what's best for him. Sadly, the chances of a match would be pretty slim for the poor little boy, anyway. :(

Good book, My Sister's Keeper.

Christy said...

I think it is a mother's natural response to protect her child. You never want to hurt your own baby, even if it means someone else's baby might be at risk. I had the same exact reaction when reading this post.

Olivia said...

Chances are that Arun isn't a match. But if you did have him tested and he is a match....well, I know it would be difficult to see him go thru any pain, but that boy needs a hero right now. Arun wouldn't understand that now, but he won't remember the pain for long. And think about what it would be like to tell him how he saved this boy's life when Arun is older. What if the shoe was on the other foot?

Celebrate Woo-Woo said...

I tend to agree with Olivia. My hesitation would be that bone marrow transplants are painful (I think even the testing for it is painful), and should I be allowed to make that decision for someone else? But, the points about him not remembering the pain and the fact that he could potentially save another's life are strong ones. I think, for me personally, the decision to test my child would come from the 'do unto others' Golden Rule. If it was my child that needed the transplant, I'd hope everyone that could be a donor would get tested. Tough decision, and no one can fault you for not wanting to put your son through it.

Cagey said...

Olivia and Celebrate Woo-Woo,
First, I do appreciate your opinions. All too often, blogs are victims of Group Think and people are afraid to offer opinions that disagree because of flaming from other commenters. I think it is stifling the blogosphere, frankly.

You both have valid points - the very ones I weighed back and forth. However, a bone marrow harvest is not an easy-smeasy procedure, involves hundreds of insertions of the needles, involves general anesthesia and does carry some risk. I probably have the biggest issue with the general anesthesia being administered to a baby during these critical years of brain development because of a personal family history with it.

If the situation were reversed, I don't think I would feel comfortable with a baby being the donor. I can only relate this in a personal manner with my nephews and niece. My older nephew is over 5 years old and I would be okay with him donating because we can explain to him what is happening. I would not feel comfortable with my younger nephew or niece donating because they are too young to understand.

Leo said...

Even Jodi Picoult, whom I find a tremendous writer, didn't find any Wham, Bam conclusions. There aren't any because life is hard.

Modern Day Hermit said...

As a parent my first service is to my own child. Especially if my child is unable to understand why he is undergoing a certain procedure that is an option to his/her own health.

He may not remember, but I would.

No medical procedure involving anesthetics is without risk and I would not be willing to risk my son (who at this time is 17 months) for the health of someone else, as cold-hearted as that might sound and as heart breaking as the situation is.

I've seen a loved one on the cliff of death and it royally blows so making the decision to NOT allow a child to undergo a treatment isn't an easy one by any stretch of the imagination.

Monkey McWearingChaps said...

I, honestly, strongly disapprove of creating children for the purpose of saving an existing child's life...for many reasons, not the least of which is that I believe people should try to bring children into the world to live their OWN lives, not save those of others. If you want a book to complement "Sister's Keeper", how about Kazuo Ishiguro's "Never Let Me Go". How is having a baby that seemingly exists for the sole purpose of harvesting blood and organs any different from creating clones that exist for the sole purpose of servicing humanity's needs for organ and biological material supply?

Parents get away with such things (conceiving children to save other children) because the Courts give remarkably few rights to children vis-a-vis decisionmaking. I mean, for GOOD reason, they're children...I'm not a huge children's legal rights movement person. But at the same time, I think parents have an obligation to think harder about the control they have over their children and what it means for their life.

If you ask me if I'd give my sister a kidney, the answer is of course. The answer would have been of course since I had a brain to think. But would I think it right that my parents would just harvest my sister as a baby to provide donations to me? I find it unconscionable. At that age, she didn't have the ability to think it through herself even at an elementary level. By the time they grow up to think for themselves, they're coerced and guilt-tripped and conflicted about the whole thing (a la the 2nd daughter in Sister's Keeper).

Every person has the right to make an active decision as to whether or not they're going to "step up" to be a hero for someone. A baby does not step up as he does not have the mental capabilities for that level of decision-making. More accurately, he is proferred by his parents based on what they believe about the greater good. It's a huge difference. The gray area lies in what each person feels about individual choice and a right to choice in their own body. Other people may feel differently, but I strongly believe it's up to the individual to make that choice.

Olivia said...

Cagey, I admit I do not know the details of a bone marrow transplant so perhaps a child as young as Arun shouldn't be put through it. I hope the other boy does find a donor somewhere.

Goofy Girl said...

Oh Monkey McWearingChaps ! Thankyouthankyouthankyou! I read the book "Never Let You Go" but for the life of me could NOT remember the name. That book was awesome, and I read it on the tails of "Sister's Keeper" (without knowing it was a related topic). Great book! Can't say more or I will spoil. thankyou!!!!

dorothy said...

I'm really glad you did post about this. In terms of "if I were in your shoes," perhaps you could get Arun tested and keep the results a secret. If this child will need the transfusion by age 7, you would be able to ask Arun whether or not he wanted to do it later.

I would never let that happen to the little angel now, definitely not at Arun's age. If she were six and could think about whether or not she wanted to do it, I might feel differently. The most important thing is for there to be no outside pressure on you if Arun did turn out to be a match, which is why I think it should be his decision only, with nobody else knowing.

That said, I would not judge you for one minute if you said to hell with the whole thing. That is something you do if you're family, excuse me, that you CHOOSE to do if you're family, but you would probably choose to do so, because that's what familes do. I'm probably making no sense here. Arun is not that child's family, so it would definitely have to be his choice, period. And he's not old enough to choose.

Lisa said...

Wow. That's one of those things that you feel crappy either way in regards to... Ughh. I hope your friend's son finds a match.

Cagey said...

The testing isn't something that can be kept secret - it goes into a central database for donors and you can potentially be a match for ANYONE - not just the person for which the donor drive was originally intended for. I didn't open THAT can of worms.

Monkey McWearingChaps said...

IMO 6 or 7 is about the youngest I could think of *asking* the child if he would mind being tested and I would only ask if it were a near and dear relative (like my immediate family or my sister's children).

I don't think a child is able to cognitively understand the concept, pain, sacrifice etc. of such a decision until adolescence.

I realise that I have no children and my views may seem harsh, but I am fairly repulsed by the idea of breeding human beings as donors on so many levels-the largest being that of individual choice. There are PLENTY of people in the world who do not have the type of relationship with a sibling that would lend itself to that type of sacrifice and you're eliminating the choice for a vulnerable individual in your care right up front.

With a donation in such a case, I am highly uncomfortable as the nature of the procedure is too intrusive to be considered temporary pain. It's hardly a vaccine.

The concept of respecting individual choice, privacy, freedom of speech, right to religion doesn't always lead to the sort of ABC-special type scenarios we expect such lofty concepts to encompass. No where is this more clear than in bioethics. Perhaps I am cold, but I think that rather than focusing on breeding children for the purpose of lifesaving genetic material and/or subjecting babies (I am not going to go into the semantics of baby v. toddler-the age described in this situation makes the child a baby) to extensive and painful medical procedures-we should focus more on the type of medical research that could actually CURE these diseases but is being prevented on account of a minority's religious beliefs.

Human beings are born to die. Harsh but true. They are not born to be backup bio-material for others.

PS: the person stepping up in this instance is X and kudos to him for that. I should have mentioned it in my first comment.