As a nurse, I deal with death more than most humans. As a neonatal nurse, I see death at a time no one ever thinks death should or would occur. Most people who face death in our unit were, only a short time ago, preparing a nursery, planning for sleepless nights of feedings and baby coos, looking into daycares and buying the cutest outfits at the store because, although the closet was crammed with pink or blue already they just couldn’t pass it up. They were rubbing their tummy and singing a lullaby planning for the time they’d rock that baby to sleep in that very rocking chair. Death of the newborn is something no one thinks of until it happens to them. But it is something I see all too often.
I take a particular interest in this subject, not because I am morbid, but because it happens. Death is a part of life. It occurs no matter what we do to fight it. We can prolong life. We have millions of advances in technology that helps us do just that. We have medications, equipment and knowledge that helps those who, only a few years ago, could not have had a chance of survival, not only survive, but go on to thrive. However, we cannot save every baby. We cannot fix every problem. And then we see the moments no one likes to think about. The last moments a mother holds her newborn and weeping over him tells him that she loves him and will forever. We watch as their body shuts down and they say goodbye. And those are the good deaths. Can any death be good in the NICU? Well, I don’t know, but I can tell you that death can be bad in the NICU.
An infant who has been so pumped full of medications and fluids that their skin weeps and swells to the point you worry to push to hard because it may just burst. And infant whose parent has never held him until he has already died because he is too unstable and “might die” if held. But if he is going to die anyway, what’s the point? The infant whose birth defects already pronounced her death long before birth, but are brought to our unit anyway, where she is hooked to many machines, fluids, stuck with needles and compressions are done repeatedly on her tiny heart all while her mother and father cannot be in the room because mom is recovering from the delivery. All of these, I would consider a “bad” death.
So what does a good death look like? What about an infant, whose mother, father, siblings all surround her in love while I disconnect the monitors, wires, tubes and other apparatuses then gently hand her to her family so they can sing, rock, read Goodnight Moon, and pray over her while she takes her final breaths? What about a family, friends and church who comes into a room to sing hymns while he drifts into a sleep from which he doesn’t awaken? What about a single mother without support dressing her tiny infant for the first time, bathing her, putting a bow in her hair, and making other memories while I help her, support her, remind her she is a good mother, and stay with her?
We, as medical professionals, often strip away everything from our patients’ families. We dictate when they can hold, touch, change a diaper, take a temperature and even talk to their child. And we have to. Not because we are evil people who don’t want the parents to bond with their child, but because we understand the mechanisms of brain development and risks associated with prematurity. But, there is a fine balance. This is, after all, still their child, not mine. I have to find ways to help them bond with their baby that is safe for the baby. I am a teacher, a healer, a gentle speaker. Too often this isn’t what parents feel though, and for that I am sorry. I can say that no one works in the NICU very long without a deep love of this profession. We definitely do not do it for the money (because it isn’t enough). We do it because we love the work. Seeing an infant go home after 6 months is the best feeling in the world. And so, for an infant to die is devastating on us, because we are healers…. We want to fix the problem. We push and push. We tell parents to “be strong.” We encourage further treatments and more medicines. We do more tests and draw more blood. And sometimes we get so caught up in telling parents to be strong and fight, that we don’t allow the strongest thing of all which is to allow their child to die.
I want to make the experience our families have with us as gentle as possible. A friend of mine often tells parents, “The NICU is one of those places you never want to see, but are so happy it is here when you need it.” We understand that. And when a child dies, it can be much more gentle than I’ve seen it in those “bad death” times.
When we can say, “You’ve fought so hard. You’ve done so much. It is ok to rest. It is ok to go on. It is ok to die. Your body does not have to fight here anymore.” Then we’ve figured it out.
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