Up to a point, it's really neat work. Admitting a baby at the extreme edge of viability, working your hardest to correct a myriad of issues, responding to sudden condition changes, updating the family in a way that conveys the seriousness without eliminating the hope you can feel them wrapped in.
Ventilator changes, blood transfusions for anemia, antibiotics, phototherapy, surfactant. Lots of blood draws, but not too many or he'll just become more anemic. Fluid boluses and dopamine for low blood pressure, sodium bicarbonate for acidosis. Balancing the need for monitoring equipment with the need to preserve extremely delicate, gelatinous skin.
"So, in other words, we should take this one day at a time?"
"We often say that we take things one hour at a time in here, maam."
Man, this kid is busy. What's wrong with my art line? Is that really his blood pressure? He's one tough little $&*! - that's for sure.
For a good while, it's fun and a great challenge. And then there's the point, often for me on the third day, where reality sinks in like a ton of bricks. (Enter 23 weeks, 500, male, yes and yes.)
It can leave you trying to reach back in your mind for those success stories... or maybe it just leaves you longing for a cold shower, a colder drink and a couple of days of doing absolutely nothing at all.
I think the real question is: just because we can, does it mean we should?
ReplyDeleteI agree with you that there are serious ethical questions regarding the resuscitation of some severely preterm babies. But luckily, at least at the hospitals where I work, I've never seen resuscitation pursued just because we can.
ReplyDeleteOften it's that the neonatologist has met with the family well in advance and given them as much information as can be known about babies at that gestational age, and we're simply respecting the wishes of the parents in exhausting every resuscitation option.
Sometimes it's that there was no time to have that conversation, or no time for family members to reach a firm decision, so we're simply erring on the side of initiating resuscitation, reasoning that we can withdraw support if the baby is later assessed to be nonviable.
Admittedly, we aren't very good at having these conversations or even at predicting which babies will be shining outliers from the otherwise dismal statistics.
"A Point Where It Hits You"
ReplyDeleteEver wonder when that point hits the parents? When they know they will be taking home a severely handicapped child, because in the beginning, they wanted everything done. In the beginning it is shock and denial and yes of course do everything do save my baby. Then come the infections, and bleeds and NEC, and PVL and all sorts of complications that they could never comprehend. I tell ya, all NICU's should have a full-time ethicist at the bedside. It can be exhausting.
You know, RR, I think it often truly hits them long after NICU discharge. I wish there we were better at predicting and helping families anticipate the issues.
ReplyDeleteMy perceptions of severely preterm babies were really altered when a friend of mine delivered at 23 weeks. Her little boy is now nearly two and he's making good progress in spite of great challenges. When he went home on a nasal cannula and only a couple of meds, they felt that the worst was over.
Within weeks of discharge, they were dealing with strictures and feeding problems from his NEC/perforation surgeries. Then came a diagnosis of craniosynostosis and the need for a helmet. More surgery was considered. Then came the infections. I think it was a shocking, maddening time for his parents.
EJ I want to share something with you. My Cousin has one child. Her child is severly compromised. However she loves that kid more than life itself. Also I have noticed a wonderful change in my Cousin. She is no longer the quiet be polite type. She is still polite. But she has had to learn to speak up to get the things her child needs.
ReplyDeleteMany of these questions are just beyond me. Sometimes out of hardship something wonderful occurs. Sometimes not. I too wish we had a magic globe to see the future but we don't. So what to do? Good question. I really liked your post. Every nurse thinks about this kind of thing. I figure if a baby responds well to resus, then keep it up. If not then call it sooner than later.
It is truly between a rock and a hard place.