It's late and I should go to bed, but I can't sleep. It's my own damned fault for going to a webpage that I had already been warned about before I even clicked.Amanda
over at Imagine Bright Futures
has been doing extensive research into biliary atresia and how it is treated around the world (BA was Annika's liver disease), and she found this page
created by an extremely religious family in Dubai who essentially decided not to treat their daughter's liver disease. It was a hard read, and I'm not sure why in the world I did it. The worst part was reading through the journal from the bottom of the page up, so as to follow the chronology, and recognizing all the stages that Annika went through as I read along. And the parents (and grandfather) were writing these journal entries in this (to me, anyway) weirdly joyful tone, while accompanying the entries with pictures of a baby who was clearly needing serious medical care right then and there
So as the parents jubilate about "how well she is sleeping," I am thinking about how worried I was about how I had to wake Annika for every single one of her feedings. As Anni's arms and legs turned to little sticks like that baby pictured, I set my alarm through the night to make sure that I didn't miss a single opportunity to feed her. Did those parents really just not know? Or were they experiencing the biggest, hugest case of denial ever?
Eventually, they write a journal entry about deciding not to pursue liver transplant. It's clear at that point that they realize that this is a death sentence for their daughter, unless a miracle happens, which, judging by the evident intensity of their faith, they may well have been expecting. No longer denial, I guess. But then there are all the entries following that one that detail her descent into liver failure and death. It was awful reading those entries and remembering Annika doing those same things - the weird breathing noises as the fluid filled her abdomen, the sleeping interrupted only by periods of wailing, the refusal to sleep anywhere but in my arms. And one day after that entry noting that she would only sleep while being held, while I was still nodding my head in remembrance, I read that she died. There's a picture of her there by that entry. A rather strange photo of her with her jaundice turning her practically neon, and her eyes closed with her mouth in an open "O". I am disturbed by the thought that these people took a picture of her moments after she died. It's a creepy thought, and I feel guilty for thinking this of them. But they seem like foreign creatures: these people with access to planes and connections to hospitals in South Africa, and even London, who say not only to themselves but to the whole world through their website, "We give our baby to God, rather than follow medical advice." These people who seem to think that being separated from one another for months would be a worse fate than watching their daughter die, and doing nothing to stop it.
Amanda, who originally posted this link over on CLASS, was in full-blown shock when she posted the link. Of course, we all know that there are kids all over the world dying of simple cases of diarrhea and other completely preventable causes, and it comes as no surprise to realize that babies born with BA in situations like those are unlikely to receive the help they need. But I think her (and my) shock came from reading of a baby dying with no intercession, born to parents who travel between countries and have a computer, a digital camera, and access to the internet. It all seemed so incongruous.
I'm hoping that just writing this all down will get it out of my head for the night.
One day later, and, although writing it down did help to abate my horror, I am still thinking about that little girl and her family. I don't think I can ever fully understand their decision, and the fact that they are evidently at peace with it...but I did at least remember how awful I felt after Anni's first surgery, the Kasai procedure, at just 6 weeks old. Immediately after surgery she was on an epicaudal (like an epidural, but numbs you higher up), which meant she felt no pain from the surgery. But as they moved her out of the PICU and toward coming home, they had to remove the pain medication, and it was evident that she was not comfortable
, to say the least. I remember thinking about the fact that the Kasai procedure has only a 25% success rate (success meaning that transplant is avoided), and agonizing that all this pain for my baby might, in the end, be for naught.
I can only imagine that this family was in some serious denial about how sick their baby really was, judging by the tone of the posts. Perhaps the doctors didn't do enough to prepare them, or perhaps they weren't prepared to hear it. Once denial became impossible (transplant is recommended), perhaps they just weren't mentally prepared for that step. Perhaps coming down off such high optimism led them to the lowest depths of pessimism, in which they couldn't imagine putting their daughter through the pain of a surgery that wouldn't be a guaranteed success. God...I don't know. Just the idea of losing that little giggle of Anni's makes my eyes swim. Normally I find the harmless voyeurism of reading other web journals a lovely evening diversion. I should know that voyeurism is never completely harmless.