News From the Nursery Lab 2008-9

When a nurse needs a break...

I stepped into a room toward the end of last week, a baby in Bay 1. Bay 1, is, for those of you who may not know, the place where the sickest of babies reside. These are the babies who require the most care.

Cat was already in the room. She's one of my favorite nurses, one of those who I really didn't like at first, mostly because she didn't seem to like me. But a common love of hand crafts got us talking and now we are both tickled when we see we're both working.

"Mornin', Cat."

"Hi, Kate." she said with her back turned from me.

"Okay for me to draw?"

"Yeah. Better yet, why don't you just take over and I'll go home, permanently."

Huh? Now, that was an odd thing to say, and I said as much to her.

"Oh, Kate, I'm so tired of all this." She gestured around the room, filled with machines that made various noises in weird syncopated rhythms. And then she gestured helplessly at the wee body in the crib.

"I don't know why we keep doing what we do."

So, as my hands follow muscle memory routine of pulling out the items I need for the draw, I glanced at Cat's face, and found tears hovering in her eyes, threatening to cascade down her cheeks.

She had care of two of the sickest babies in the unit that night. Those two were both having nights that would challenge the most patient of nursing staff.

Nurses don't get much of a break on nights like that. As soon as you get one babe settled, the other starts. It weaves back and forth throughout the night, almost as if they were tag-teaming each other.

This little guy was having a rough night. He's blind and deaf; he's hydrocephalic, and spastic. His body siezes, and even when it's not in active siezure, it's moving, jerking, one minute the small limbs beating a tattoo against the bedding, the next flailing wildly in the air. You can't tell if he's in pain. The movement is so constant there are no markers to give much in the way of visible signs.

The other baby in her charge was no better. While not the same symptoms, that little one is in desperate need of a liver transplant if she is to survive. The odds of that happening are virtually nil. So, she's heavily sedated, and lots of blood is drawn throughout the day to monitor liver function, but also her heart. Then they hang blood for a transfusion because so much is being drawn for labs. It's a vicious circle.

I became Cat's ear for the next half hour or so. The things she said to me would probably not been popular topics with much of the nursing staff.

We talked about a few of these babies and their illnesses. The baby who we stood next to won't have much of a life. And, her other charge, is, to be quite honest, pretty much doomed not to have a whole lot of time on the earth.

There's a tiny part of us, our inner child, perhaps, that hangs onto that thread of hope for a miracle. We want to be able to fix all those small bodies.

As it turns out, Cat and I both question why. Yet, we both continue to hang onto that hope.

This particular night, though, Cat was on the warpath. It was a helpless warpath for her, and she vented her frustration at me. She told me two things that shocked me. One was something I won't repeat here; the other was that full disclosure of a prognosis is not always given to the parents.

That means that the messenger is not giving ALL the information to the parents. The parents of both of Cat's charges apparently have not been told their children have a limited lifetime. They are being given false hope that everything will be okay, that it just takes time.

This isn't right. While it may be shocking for a parent to hear, they need to know up front what is going on medically. They need to know an absolute prognosis. NICU parents need to learn to ask the question, "Is my baby going to die?"

The sad answer in some cases is, "Yes."

If the answer is yes, then parents need to be told what their baby is feeling. They need to be told that the kid is zonked with morphine because it is in so much pain that morphine is the only thing that will take it away. They need to understand that the intubation is forcing the baby to breathe sometimes, and life would cease if the tubes were removed.

We need to think back 30 years, 50 years, even more to whether or not babies would live without the medical marvels we've achieved. Should we be keeping them alive if they can't *ever* maintain their own life support?

I'm not saying we should routinely dispose of these precious beings - don't even think that. I think it's wonderful we can create a miracle for parents whose babies have decided to be born at 24 weeks of gestation. I think every bit of fight we give them is well worth the effort, and repair of things we can fix is the absolute right thing to do and SHOULD be done.

But, a child who has no hope? Is it fair to keep them alive when their body cannot sustain life without mechanical means?

I wrote about a baby recently who has no brain function. She's still in the NICU, hooked up to machines that keep her alive. Her mother stays at the hospital 24/7. Dad is seldom seen. This baby is due to go to a facility in another state for people who are profoundly brain damaged. This baby is being taken care of by the taxpayers now in the state she was born; in a few weeks she'll become the ward of another state and be taken care of the taxpayers in that state. She's moving to another state because the one facility capable of taking her in this state will have no openings for AT LEAST one year, perhaps longer. And, financially, it will be far less expensive to care for her at a facility elsewhere than to take up expensive NICU space.

In this case, the parents just plain don't get it. They honestly think that somehow the hospital will be able to create a brain where there isn't any. They are very young parents, not from this country, and they think the USA is a miraculous place that can fix every ill because it's the USA. So, their baby will be fixed, too, right? No. There's no possible way for that to happen. There was a point where, if the parents were made to understand, it would have been possible for some good to come from this. Though they would have lost their child, other children would have had a chance to find their miracles through harvesting the organs of this child when it crossed. But, it's too late now. There've been too many infections, too many drugs to make harvesting possible.

I can't help but think we're the ones, we of the medical profession, who have dropped the ball on this one...and several others.

I'm not saying that all children should be perfect. I'm saying that sometimes babies are born whose time on earth is limited and "do no harm" does not necessarily mean "keep alive by any means possible".

Cat and I talked about God, that night, too. We talked about "intelligent design" too. What we talked about would take too long to put down right now. It's something that I'll write about another time. Right now, my body requires either chocolate or sleep. And, since there's no chocolate in the house, I guess I should go sleep.

Cat is away on a much needed vacation for a couple of weeks. I hope she's having a marvelous time in the far away state she's visiting. She needs the break. I hope she comes back refreshed and a little easier in her mind. We need nurses like her.

And, I'll be taking a few days off in a couple of weeks myself, to find some air and fire, some spiritual renewal. I think I'm due for it, too.

See you next time.

Kate