The choice that haunts

Lots of heavy stuff lately.  That’ll change, but not in this post.

This is a post about taking my daughter off a ventilator. Feel free not to read it.

I reserve the right, on this post, to delete comments if they’re bothering me, but respectful discussion should be ok. Welcome, actually. But you may want to skip it, too. A picture of Noah is just one post down!

I’ve been thinking about this a lot lately; partly because a story about another family making a very different decision has been in the news a lot, and partly because the weather has been slightly reminiscent of March. Or maybe it’s just been on my mind.

For me the beginning of that decision was probably the first night Emily was transferred. I was still at the hospital where she was born, still recovering from the delivery (about 30 hrs earlier) and still in shock. I still hadn’t slept and a nurse – the only nurse who ever actually examined me to check the bleeding – impatiently gave me an Ativan which did not knock me out but put me in a strange uncaring floating state.

It was in that state that I started to think about the information I had been given.  The delivering ob never spoke to me post delivery except two words: I’m sorry, and he squeezed my hand. That was it.  The neonatalogist had spoken to Carl and I at some length about blood gases and seizures and brain swelling, but it could not penetrate my fog at all. 

I had asked her, still in a wheelchair ’cause of the epidural gone mad, what the worst possible outcome was for Emily and she had said “learning difficulties,” which my formerly-LD-brain had translated to “learning disabilities” and not the incredibly insulting unpolitically correct (but more accurate to my brain) term “retarded.”  But that had been before the second intubation failed; before they stopped talking to us at all because they wanted the Sick Kids team to take over.

But then there was the Sick Kids transfer team.  It took them about 5 hours to stabilize Emily enough that she could be transferred, and yet once she was encased in the incredible moving incubator/ventilator/monitoring system (that reminds me to this day of Ripley in Aliens) they wheeled her into my room so that I could see her.  The transferring MD sat on my bed and said to me very clearly “I want to tell you that your daughter’s condition is extremely serious.”  The code at that point was clear to me but I admit it took me 12 hours or so (and an Ativan) to push past it to hear the reality: she might not make it. If she does, her life is not going to be anything resembling normal.  

So it was that night, floating on Ativan, that the switch flipped in me that must flip in so many parents whose children are diagnosed with differences. It’s the one where you go beyond your dreams – in my case, one specific one would be a child who would share literature with me – and you find a terrible love and depth of fight in you. It was probably partially the Ativan and partially shock and partially that it’s pretty easy to contemplate these things when simply looking at a newborn, but I found that for me what I feared was not being able to do the right thing – I started worrying about how we would afford special schools and moving to a wheelchair accessible home and that kind of thing. 

But the decision – to see my daughter – was made. I find myself getting so unverbal about this, but there really was a decision point. It was not a sure thing. Pregnancy is only nine months and I had only seen Emily three times since feeling her slip from my body. It was a possibility I could touch and smell to categorize her as “a problem to solve” in my head; to divorce the life in my womb the way you would leave a once-beloved spouse and just take her on as a burden. I credit only grace for that: that was the divine presence, for me, not someone who would make a miracle outside in terms of a recovery, but one that made one inside me. 

(Of course later all the rage about the lack of miracle would hit. Still does. If there is a personified type of God, she and I are pretty much still living in the same house but I am not really speaking to her all that much.)

So when I hit Sick Kids the next day it was with precious thin ounce-lets of pumped breast milk for her and a purpose. To get to where Emily was, not go away from her again, and love her.  I brought clothes, blankets, a stuffed toy, books to read to her and a CD to play for her and a picture for her incubator, since during my pregnancy I’d read just enough to figure out that these things might be good in a NICU.

Sick Kids had oriented Carl already so he mostly oriented me: this is where you sign in; this is where you disinfect your hands; these are when the shifts change so you can’t go in for a half hour at these times; these are the pumping/sleep over rooms and if you request them early enough you might get one to sleep over. We put in for a room for that night and then I got to see Emily again.

I wish I could say I paid attention to who her nurse was and all that but I didn’t; I find now, almost three years later, none of the names have stayed with me and I am deeply ashamed, because those nurses were so good and caring.  But whoever her nurse was, she talked to us a bit about how, as it was a weekend, there were a lot of tests that couldn’t be run, and about how they were stabilizing her (continuing) seizures, and about painkillers and how a nurse had managed to get a line into her so that they could hook a lot of things up to that and not have to keep sticking things in her veins. Of course all around us the machines were whirring and pinging; that NICU cacophony that most people can’t forget once they’ve heard it.

I paid attention, more or less, but I’d lost my capacity to process again. What I mostly heard was that the real tests were coming the next day.  And then the nurse asked me if I’d ever held Emily and I said no, and she said we should wait there, so we did, and she arranged with what seemed like a dozen but I think was really only three nurses; all kinds of things had to be unhooked and rehooked and it was a huge fuss.

And I held Emily in my arms for the first time and it was the best thing ever. Ever. Nothing, nothing could take that away.  Probably that’s the first most primary reason I ever opened the possibility of having more kids, because there was nothing else like it.

But then I looked up at the nurse whose call it had been and what I saw in her face got through, and it was that she was creating a moment, out of a belief there wouldn’t be all that many of them. I can’t tell you what it was – pity isn’t close, sympathy isn’t strong enough.  But it scared me badly. 

After a while – time doesn’t really exist in the NICU, or it didn’t for me – Carl and I retreated to one of the parent rooms for sleep, supposedly.  What we did instead was cry and talk a little. It wasn’t all that many words, but we found ourselves utterly and instinctively on the same page which was that we were prepared to do anything for our daughter, including letting her go.  That was counter to Catholic teaching, sort of, and not something we were sure our extended family would support.  But there was a rightness about it for us and confirming that we were together made sleep and going on possible. (Well except for all the pumping and going to the bathroom that post partum stuff requires).

So we got a few hours of sleep and then at 2 am I woke up and the Sick Kids NICU is fine with that so I went down to see Emily and slept a bit more and went to see her. It was incredibly wonderful to be able to just go see her whenever I wanted, whatever the hour (except shift changes).  Every bit of me was screaming “where’s the baaaaaaby?” and all my dreams were about losing the baby; I really believe it was the mammal instinct and being able to soothe it a little was incredibly helpful.

Then, at about 9 am or so, Carl and I walked in to find that Emily was hooked up to a EKG (??) machine (something measuring brainwaves anyway) and the technician, a young Asian guy, was – crying.  He was working hard, making all kinds of notations, and tears were just flowing down his face.

That was not a good sign. Then for a while we couldn’t see her because they were doing an MRI and other tests, and after that my memory gets a little fuzzy – family came and went and I ate something and I don’t know what all else happened.  I think we met with the chaplain and found that he was sort of a cool guy, and we decided that no matter what we might like to have her baptised.

And then in the afternoon we had a meeting with “the team” – the neonatalogist, nurse, and chaplain, and there was another doctor there too who was a neurology guy, I think. I can’t remember.  I do remember the sense of it – these are very busy people and indeed the meeting time changed a bit, but once we were in the meeting they gave us the impression that they would stay there forever if we wanted them to. And they gave us the test results in clear and simple language.

Irreversible brain damage; they showed us how only the very base reptile functions were still working. Damage to major organs.  No response in Emily’s pupils; no response to a hearing test. No swallowing reflex. Probably a capacity to feel pain which was why they kept her on morphine.  We didn’t have a whole lot of questions; both Carl and I have just enough medical knowledge to get what they were saying.  Then we asked what her quality of life would be like.

And they told us. She wouldn’t hear, see, or be able to move. She would likely continue to have seizures. She wouldn’t be able to swallow, so she would never eat or drink and she would have to be cared for 24 hrs a day so she wouldn’t choke on her own saliva.

And then they told us that their recommendation was that we take her off the ventilator. They didn’t know how she would do, because she had been fighting to breathe on her own now and then. They suspected that she was learning to breathe all over again. And they mentioned that if she did, we might have to consider “other measures” (meaning not feeding her). 

We took a few minutes to absorb that and I asked how long they thought we had to make the decision.  I sort of assumed they would give us an answer in the area of weeks. 

The doctor said he would recommend within the hour.

Carl and I didn’t need to talk about it too much, because we were really on the same page in some way, but we did sit with the decision for a while.  We decided that we were all right with taking her off the ventilator and seeing what she could do.  I don’t know that we could have gone any further than that, but taking her off the dreadful machines seemed a reasonable middle path, at least. 

For me I have to say it was the swallowing that decided me.  I think I could have talked myself into the deafness and blindness and lack of brain function as being manageable, at that point in our experience.  But that she might very likely choke on her own spit and die if someone fell asleep for half an hour at the wrong time – and the horribleness of having to be suctioned out all the time without any understanding of anything… that image, however imaginary or conjectured, decided me. 

I also harboured a few doubts and maybe still do, because of a documentary I saw in grade 9 about hydroencephalic kids who had almost no brain but didn’t know it until they were tested for some reason.  I actually asked about that in the meeting and I got a clear answer for why Emily’s situation was different – she had less brain than that and none in the higher function areas.  But I still wonder, a  bit.

Stem cell research haunts me a bit too; what if we could have regenerated her brain from her stem cells? Even in 5 or 10 years? But that is a big what if to continue someone’s life knowing it would be painful without any understanding or joys of the colour blue or the sound of music. 

The thing about this kind of decision – I’ve said it before and I don’t see changing my mind – is that because of its weight, it is not designed to be easy. In my opinion, of course, but it’s a strong one.  Anyone who is certain of the right choice scares me.  I honestly believe the – penalty is too strong a word but result seems too detached – cost of that decision is living with the uncertainty, forever.  I believe when you decide whether someone lives or dies it probably should haunt you, at least a little.  Not dysfunctionally,  but some. Otherwise maybe you haven’t understood the implications.

We told the staff and they pretty much flew into action to set it up for us.  I wouldn’t say they were eager, at all.  But there was an underlying feeling that they felt it was a good decision. I was glad for that and still am; they deal with these things more often and I felt that they were offering their genuine expertise. Not an agenda. For all I know they would have been the same with the opposite decision.

But I did feel like their experience was at my back. That hospital would see a lot of kids with hugely serious issues and I suspect that they had much more idea of what profoundly disabled would be like for Emily than we possibly could without going through it.

Everyone family-wise that we talked to ourselves supported our decision fully; we were pretty careful which family members we talked to, and we invited those in Toronto (my mum and dad, my sister, and my MIL) to come down to the hospital for a baptism.  I know that pretty much all of them found that hard to take; a baptism is a traditionally a celebration of life and I think most people were also sort of finding it hard to dedicate a life to God that it seemed was already taken. 

But for me, it was something I could do, some small milestone we could still have together, and I needed that. Also it seemed to me more likely that we would regret not doing it more than doing it, if something had to have regrets attached.

So we designed a kind of ceremony where the staff took her off the machine with whoever in our family wanted to be there. We didn’t know if Emily would die right then.  Carl and I chose not to be right there for that process; I’m not sure how I feel about it now but at the time I felt like I would lose it if I were.  So we waited for her in one room and they brought her in and Carl and I had about 20 minutes alone with her, because we wanted that in case, again, she didn’t make it.  The only tubes she still had were water and morphine, to keep her comfortable.

Then we had a small baptism and the chaplain sat with us all for a while and then he left, and then everyone held Emily and we took pictures.  She kept breathing the whole time, although if you held her head at the wrong angle she would start to go grey.  She was breathing that stridor sound the whole time, high pitched noises. Then everyone gradually left except for Carl and I, and we stayed with her in the parent care room (where people going home from the NICU get a 24 hour “test drive”).

The nurses came in and out to check on her and us, and one encouraged us to change her diaper, which was – oddly neat, since we never had.  She told us everything you would normally tell new parents – wipe from front to back, etc. – and also told us we were great parents.  It may sound morbid but it wasn’t; it was respectful at the time and I clung to those words a long time afterwards, through all the hatred of my body that hit.

They did have to tell us now and then that we could change our minds; probably a requirement either legally or perhaps by medical oath.  It was difficult to have to go over the choice more than once, but I think that’s fine: those kinds of choices should be difficult. We also had to answer the organ donation question.  Everyone knew most of her organs weren’t viable in any way (only her corneas, and only for research) but that we were given the opportunity was still a big deal to us.

That was a long night. I didn’t want to sleep and lose any time with her but I did sleep about an hour, with her on the bed with us, and Carl dozed a bit too (we took turns).  Her breaths just gradually got further and further apart until we couldn’t hear them any more (she did gasp a little at one point; the last fight I guess) and then we thought she had died, but the doctor said no, and we had about 45 minutes more before she was truly gone.  I could tell the difference then actually but I can’t say there was a spiritual glow moment or anything.  She had, it seemed, been moving away from us since her birth.  The most alive I ever saw her was the first time in the East General NICU.

There was stuff after but that was all that pertained the decision.  As I said, I can’t say it was the right one.  Stories in the news always make me wonder.  Was it fear-based? It didn’t feel it at the time, except fear of her suffering awfully only to die suffering.  But the paths of the subconscious are strange and sometimes when I hear about disabled kids and the terrible choices their parents have to make over and over I wonder if I had some understanding of that and choice the easy path rather than the right one. Then sometimes I go the other way and I feel hugely grateful that we were guided in making the choice to let go and not try to be selfish about keeping her with us for us and making her suffer in the process. 

So, I don’t know.

Heavy stuff, I know.