there’s this little girl i want to meet someday. her name is Lily. she was four weeks old yesterday.

her parents live here, in this smallest of capital cities. i don’t know them…though in the newpaper clippings they look vaguely familiar, as if perhaps i’ve brushed by them in a grocery store aisle or a coffee shop over the years.  i may happen on them again someday, later, our daughters in the same gymnastics or driver’s ed class. i may. i hope i do.

they are not here right now. they’re in Toronto, with their daughter, at Canada’s foremost hospital for sick children.  Lillian O’Connor is four weeks old. she is waiting for a heart transplant.  without one – and soon – she will not survive.

there’s another little girl in the same hospital who i’ll never meet. her name is Kaylee. she was two months old yesterday. she has a rare and fatal brain malformation…there’s nothing doctors can do to save her.

Kaylee’s parents want to donate Kaylee’s heart to Lily, if there is compatibility and the ethical protocol can be met…and if Lily does turn out to be highest on the recipient list when Kaylee is declared dead.  the story is an emotional Paaschendale…mud and tragedy enough to drown in.

21 years after the first successful infant heart transplant, infant organ donation is still a very messy issue.
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i’ve been waking up with Kaylee and Lily’s parents on my mind the past few days.   i’ve been waking up a lot, admittedly, with a teething baby whose bronchiolitis has her jacked up on ventolin and sleeping in torturously small 45 minute increments the past 36 hours or so.  crawling out of bed at 2:30 am, and 3:30, and 4…i consciously force my brain to remind itself, i’m glad she’s here. i’m glad she’s relatively healthy. this too shall pass...and it can hurry the f*ck up and not let the door hit it on the…grumble grunt…zzzzz. the reminders keep me from cursing quite so flagrantly.

four years ago i would have eaten glass for the luxury of waking to soothe my baby.

i think Lily and Kaylee are both first babies, as Finn was.  i peer into the picture of their parents’ faces, these four new parents, on my computer screen and wonder.  any time a death sentence is pronounced upon your child, the world crashes in on itself.  when it is your firstborn, and parenthood is a new world you’ve turned your life inside out to embrace, the crash is perhaps particularly bewildering, because you become that contradiction our society has no words for…a parent who has no child.

i wonder what will happen to them, to Kaylee’s parents, to Lily’s. about waiting by the bedside of your daughter, waiting for news of a transplant heart, every cell trained on wishing and praying and willing the universe to provide; about the helplessness and heartbreak of knowing mercy can come only in the form of another family’s hell. i wonder about Kaylee’s mother waking in the middle of the night a month from now, and whether some small part of her will rail that it was not her girl who could be spared. i wonder how their sorrow will mark them. her mother is only twenty…i heard her voice on the radio this morning, and it made me cry. i hope her strength is long, enduring. i hope nobody is fool or cruel enough to say to her, “you’re young. you can have another baby.”

i wonder at the grace shown us, strange backhanded grace, that we were never given hope after Finn’s first lung collapse at an hour old.  i knew his death came because nothing more could be done for him…not because the cure didn’t come in time, not because there were no donors to save him.
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nobody talked to us about organ donation when Finn died. he only weighed a kilogram, hefty for a 26 weeker, but – as vital organs mostly need to be transplanted among people within similar weight ranges – probably too small for any recipient baby to have undergone the transplant procedure.  his corneas? probably too underdeveloped. and the oxygen loss he suffered when his lungs failed him at birth – that probably made him a poor donor too.

or so i tell myself. in truth, the possibility of donation didn’t cross my mind during the hours we had with him. and it was never mentioned, probably for all the reasons above.

if it had been, in that strange underwater blur of clanging ventilators and harsh lights and fear and beauty that was the lifetime lived in the blink of an eye beside that little incubator on which i wrote his name and all my fierce, defiant hope on a piece of masking tape, i might have resented it.  it takes time to process the shock of having had a baby at all, let alone a baby whose prognosis is suddenly more dire than ever imagined…and time is precious when you don’t have much of it and thinking about after when he was still here was something my mind flatly refused to do, full stop, except to cram in as much of the sight and the smell and the feel of him, tiny fingers squeezing my own, as i could while i could.  because i did understand, right from the moment that first doctor clapped hope shut all over my eager face, that time would be too short and time with him was all that counted.

and yet, in the same breath, i would’ve said yes, had it been an option. because some part of him, then, would have had more time. even if that part was not for me to touch, to know.  the hardest point of coming home with just a blitzkreig of memories and an urn was that my child – in the eyes of the world – disappeared. i could do nothing to help him. but to help another child live through him? that difference would’ve been staggering, i think, on the long road to my own peace.

organ donation among infants is relatively rare, and controversial. even when a child’s  physiology is incompatible with life, as in the case of ancephaly or the brain anomaly Kaylee suffers from, the requirements for declaration of death are often not met until healthy organs have deteriorated past the point of transplant.

the rules exist to protect the living from having organs harvested, obviously.  and yet the system works particularly poorly with infants because definitions of death – brain death vs. cardiac death – are inconsistent and because the organs are so small and easily damaged.

as it stands at latest reporting, Kaylee’s parents plan to take their little girl off life support today.  they plan to make her heart available – so doctors will stand by, waiting for her heart to stop beating, and for the full five minutes to pass before she can legally be declared dead. and Lily’s parents? they have to decide whether to accept the heart, to risk having their daughter prepped for surgery and readied to receive the heart, without knowing whether or not after the five minutes required by law have past Kaylee’s heart will still be viable.

gah.

and i sit here in Lily’s hometown, what should be Lily’s hometown someday, my heart in my mouth.

these two families have found each other in Toronto over the past week or so, and in each other found the possibility that their daughter’s stories may merge, two hearts into one life.

Update: the story only gets more fraught…last night, Kaylee’s parents said goodbye and their daughter was brought into surgery to attempt donation (though it apparently isn’t clear whether Lillian was, in fact, the designated recipient), but Kaylee stayed awake when life support was removed. as her condition means her organs only fail when she’s asleep, the surgery was obviously called off.  it doesn’t mean her prognosis, unfortunately, is any rosier, and her family is vowing to try again for donation if circumstances make that possible.  http://www.theglobeandmail.com/servlet/story/LAC.20090408.BABY08/TPStory/TPNational/Ontario/