page27 (1/2)
" she says woodenly, before I can ask the question "She was put under general anesthesia because she was so young, and needles were put into the crests of her hips to draw out the marrow"
"Was it one needle stick, like the other procedures?"
"No," Sara says quietly "It was about fifteen"
"Into the bone?"
"Yes"
"What were the side effects for Anna this time around?"
"She had soesics"
"So this tihtand she needed medication herself?"
Sara takes amarrow isn't considered a particularly invasive procedure for a donor Maybe I was just waiting to hear those words; maybe I needed to hear the as much of Anna as I should have been, because I was so focused on Kate But I know beyond a doubt that--like everyone else in our fa more than for her sister to be cured"
"Well, sure," I reply, "so that you'd stop sticking needles in her"
"Enough, Mr Alexander," Judge DeSalvo interjects
"Wait," Sara interrupts "I have so to say" She turns to me "You think you can lay it all out in words, black-and-white, as if it's that easy But you only represent one of hters, Mr Alexander, and only in this courtroom I represent both of them equally, everywhere, every place I love both of them equally, everywhere, every place"
"But you admitted that you've always considered Kate's health, not Anna's, inthese choices," I point out "So how can you claim to love both of the one child in your decisions?"
"Aren't you asking ?" Sara asks "Only this time, to favor the other child?"
ANNA
WHEN YOU ARE A KID you have your own language, and unlike French or Spanish or whatever you start learning in fourth grade, this one you're born with, and eventually lose Everyone under the age of seven is fluent in Ifspeak; go hang around with soiant funnelweb spider crawled out of that hole over your head and bit you on the neck? What if the only antidote for venom was locked up in a vault on the top of a h the bite, but could only move your eyelids and blink out an alphabet? It doesn't really o; the point is that it's a world of possibility Kids think with their brains cracked wide open; beco shut
During the first recess, Campbell takes me to a conference room for privacy and buys me a Coke that isn't cold "So," he says "What do you think so far?"
Being in the courtroohost--I can watch what's going on, but even if I felt like speaking no one would be able to hear me Add to that the very bizarre way I have to listen to everyone talk about ht there, and you've landed in my surreal little corner of earth
Campbell pops open his 7 UP and sits down across froe, and then takes a good long drink "Comments?" he says "Questions? Unadulterated praise for ation?"
I shrug "It's not like I expected"
"What do you mean?"
"I guess I figured when it started, I'd know for sure that I was doing the right thing But whenher all those questions" I glance up at hiht"
What if I was the one as sick? What if Kate had been asked to do what I've done? What if one of these days, some marrow or blood or whatever actually worked, and that was the end? What if I could look back on all this one day and feel good about what I did, instead of feeling guilty? What if the judge doesn't think I'ht?
What if he does?
I can't answer a single one of these, which is how I know that whether I' up
"Anna" Caets up and comes around toyour mind"
"I' my mind" I roll the can betweenthat even if e don't"
When I elve I started baby-sitting for tho live down the street They're only six, and they don't like the dark, so I usually wind up sitting between them on a stool that's shaped like the stubby foot of an elephant, toenails and all It never fails to ay switch--they'll be cli the curtains and bam, five minutes later, they're conked out Was I ever like that? I can't remember, and it makes me feel ancient
Every now and then one of the till fall asleep before the other one "Anna," his brother will say, "how many years till I can drive?"
"Ten," I tell him
"How many years till you can drive?"
"Three"
Then the talk will split off like the spokes of a spiderhat kind of car will I buy; ill I be when I grow up; does it suck to get hoht in middle school It's totally a ploy to stay up a little bit later Soo to sleep See, I get a round hollow spot in , but also knowing it would co
The second witness Caen, the head of the medical ethics committee at Providence Hospital He has salt-and-pepper hair and a face dented in like a potato He is siven the fact that it takes him just short of a millennium to recite his credentials
"Dr Bergen," Campbell starts, "what's an ethics committee?"
"A diverse group of doctors, RNs, clergy, ethicists, and scientists, who are assigned to review individual cases to protect patients' rights In Western Bioethics, there are six principles we try to follow" He ticks theers "Autonoht to refuse treatment; veracity, which is basically informed consent; fidelity--that is, a health-care provider fulfilling his duties; beneficence, or doing what's in the best interests of the patient; nonood, you shouldn't do harery on a terminal patient who's 102 years old; and finally, justice--that no patient should be discri treatment"
"What does an ethics committee do?"
"Generally, we're called to convene when there's a discrepancy about patient care For example, if a physician feels it's in the patient's best interests to go on with extraordinary measures, and the family doesn't--or vice versa"
"So you don't see every case that passes through a hospital?"
"No Only when there are co physician asks for a consultation We review the situation and make recommendations"
"Not decisions?"
"No," Dr Bergen says
"What if the patient co is a minor?" Campbell asks
"Consent isn't necessary until age thirteen We rely on parents to make informed choices for their children until that point"
"What if they can't?"
He blinks "You mean if they're not physically present?"
"No Ito, that in so choices in the best interests of that child?"
My "
"Sustained," Judge DeSalvo replies
Withouta beat, Campbell turns back to his witness "Do parents control their children's health-care decisions until age eighteen?"
Well, I could answer that Parents control everything, unless you're like Jesse and you do enough to upset thenore you than pretend you actually exist
"Legally," Dr Bergen says "However, once a child reaches adolescence, although they can't give forree to any hospital procedure--even if their parents have already signed off on it"
This rule, if you askEveryone knows you're not supposed to do it, but that doesn't actually stop you
Dr Bergen is still talking "In the rare instance where a parent and an adolescent patient disagree, the ethics cohs several factors: whether the procedure is in the adolescent's best interests, the risk/benefit scenario, the age and ument he or she presents"
"Has the ethics co the care of Kate Fitzgerald?" Campbell asks
"On two occasions," Dr Bergen says "The first involved allowing her to enter a trial for peripheral blood stem cell transplant in 2002, when her bone marrow transplant and several other options had failed The second, more recently, involved whether or not it would be in her best interests to receive a donor kidney"
"What was the outcoen?"
"We recoerald receive a peripheral blood steroup was split on that decision"
"Can you explain?"
"Several of us felt that, at this point, the patient's health care had deteriorated to a point whereto do ood Others believed that without a transplant, she would still die, and therefore the benefits outweighed the risk"
"If your teaets to decide ill ultimately happen?"
"In Kate's case, because she is still a minor, her parents"
"During either of the ti Kate's medical treatment, did you discuss the risks and benefits to the donor?"
"That wasn't the issue at stake--"
"What about the consent of the donor, Anna Fitzgerald?"
Dr Bergen looks right at me, sy I' this petition in the first place He shakes his head "It goes without saying that no hospital in the country is going to take a kidney out of a child who doesn't want to donate it"