This Tuesday, Sean and I were back at the out-of-town hospital, to speak again with the doctor about Sebastian’s autopsy. Thankfully, this time we didn’t wait long at all – and we had already eaten lunch at my favourite Indian restaurant, so that helped my state of mind.
The doctor cut right to the chase: there was not a lot of new information. It’s possible we may end up with a few more facts someday, but we’re not holding our breath.
Here’s what we actually know:
- Sebastian was NOT anemic or hydropic; those were false conclusions drawn by the original pathologist without knowledge of our last ultrasound.
- His heart weighed too much for his size/age. (There was indeed a typo in the report.)
- There were iron deposits in his liver that indicate hypoxia (not enough oxygen).
- He was born with no amniotic fluid.
What we don’t know:
- Whether his heart weighed too much because it was overly dilated or because it had thickened muscles;
- Why it weighed too much (the above conditions have entirely different sets of possible causes);
- Whether the hypoxia was a one-time cord accident, or something recurring/intermittent;
- Whether the hypoxia caused the low fluid, or vice-versa;
- Why Sebastian actually died.
We were told it’s highly unlikely that the cause of death was something inherited, and that even if it was, these things are usually one-time situations, not expected to recur.
Point being, go ahead and try again. Which is good.
I got teary for a moment when the doctor was talking about cord accidents, and how when there’s no fluid in there, it’s easier for the cord to be compressed under an arm or behind a knee or some such… I couldn’t help thinking again back to the night before Sebastian died, wondering for the thousandth time if we could have actually saved him so that E could have a little brother right now. But no – his heart definitely had something wrong with it. That would have remained an issue.
I am still, always, so sorry we couldn’t bring home his baby brother.
This morning, Sean told me about something E said last night. They were saying goodnight, talking about his stuffed toys in the bed: “We’ve got your mouse, and your doggie, and your little boy.” (That’s the one Grammie crocheted for him.)
“Where’s the little boy?” E asked.
“He’s right here beside you.”
“No,” said E, “where’s the little boy who lives in your necklace?”
Wow. Good thing this was Daddy; I would have wept. “You mean Sebastian… Well, he’s not alive, buddy. He’s gone.”
E was calm, but curious. “Did Sebastian go to the doctor and die?”
“Yeah, sort of… he died in the hospital.”
“Daddy, which way is the hospital?”
[E is obsessed with directions right now – I’m hoping he’ll be the opposite of his Mommy and have an accurate inner compass.]
My poor, sweet little E. This mini-conversation makes me wonder: is he thinking about Sebastian just way more than we realize? When Daddy mentioned a little boy, did he somehow suddenly hope his baby brother would be in his bed? My thoughts can’t even go near this without my eyes filling up.
This is one reason it’s tough for him to be as smart as he is; nothing goes unnoticed. He files away everything. Telling him only bits of what happened to his sibling will not suffice for long. I guess we’ll just have to feel our way on this.
Below, I’m including one of my favourite Christmas choral pieces, O Magnum Mysterium…. oh, great mystery. This choir (the University of Utah Singers) does one of the best versions I’ve ever heard of this very difficult, sublimely beautiful piece. If you have five-and-a-half minutes and a set of earphones, it’s well worth an attentive listen.
I know this song is about the birth of Christ. But it comforts me to listen to it (even as it makes me cry), and think of Sebastian as a great mystery: a tiny bundle of divinity, exquisitely special for his own reasons… now at one with an even greater mystery.
I’m sure it’s awesome where he is.