encephalocele ethics

[AliRae]

Hey there you current PICU warriors! I'm sitting here on my boat in Liberia and wondering if anyone can help me out a bit.

We did an encephalocele repair yesterday. 2 month old baby, 3 kilos. Her CT had shown agenesis of the corpus callosum and a Chiari I malformation along with the encephaocele, which was an extensive one (extending into both orbits). She seems a bit microcephalic too, just to add insult to injury.

Given the fact that we're in an environment where intensive monitoring isn't really possible and where she's coming back to a ward with 15 or so other patients, all in various stages of illness and infection, it seems to me like this wasn't really an ethically okay move. This is a family from up country who trust "white people" implicitly. I just question whether informed consent was ever properly obtained, since we had an aunty translating into the tribal language for us, and we have no idea what she was really saying. It's hard to tell whether or not the mum understood the implications of the baby's CT even preop. I don't know. I struggle with this stuff.

[gal220RN, BSN, RN]

AliRae:

I am so thankful for your willingness to care for the kids who are outside the boundaries of the good ol' USA. I can not even begin to imagine caring for such sick kids who would easily meet ICU criteria without the modern "technologies" we use daily. I suppose you have to refer back to that great nursing skill of patient assessment and actually look, listen and feel, instead of having your eyes peeled to numbers across a screen.

You are right about being concerned about the ethics of your little patient. However, under the circumstances, were there any other choices? Where else could they have gone? Of course, pallative care is an option. As long as the family understands the limitations of the surgical intervention, you are doing all you can do.

Press on and Godspeed:saint:

[NotReady4PrimeTime, RN]

I know I'd be feeling a little ethical pinching over this one. I'm with you in wondering about the issue of informed consent. I would be surprised if the parents really understand what sort of life this child will have, and how her life-long (however long that will be) care will impact on them. The level of function of kids with agenesis of the corpus callosum or Chiari I can be so variable that it's impossible to predict what her life will be like, but judging from what you've described, she likely will have gross motor, fine motor, oropharyngeal motor, visual, aural and intellectual effects. Poor baby.

[SuesquatchRN, BSN, RN]

I heart you. I don't know enough about this child's prospects to make an informed comment, but you do good work.

[AliRae]

I guess when you pray for miracles you shouldn't be surprised when they happen?

She's doing well. For the past 72 hours it's been myself, another PICU nurse and a NICU nurse consistently taking care of her, which I think helps. She has a small CSF leak from one of her drains, but it's resolving. She's breastfeeding like a champ, neuro checks are A-OK, she cries appropriately and is consolable, and she's even making squeaky little baby noises. We keep her corner of the ward blocked off from prowling visitors, and there's a 2-empty-bed radius around her (our best efforts at infection control). We shall see how this one progresses ...

In other news, since I had a slow day on the ward when they did her surgery, I got to pop into the OR and see my first baby brain. So cool. When are you all coming over to play?!