Originally uploaded by Em's World
If we're lucky, at some point in life, we will have at least one "A-ha Moment." Some of us are lucky enough to have more than one of these moments - even though we may not realize we've had it until later in life, on reflection of how we ended up just where we are. Hopefully where we all end up is a place that brings us joy and fulfillment. I think that part of getting to these places requires looking for and taking note of the A-ha moments, the pivotal moments when the universe, or your deity, or your subconscious is telling you, "Hey! Look over here, lookey, lookey, here's a clue to your path!"
Not all of the clues are necessarily positive, warm-fuzzy experiences. Some of them hurt, shake us to our core. Some of them anger us, frustrate us, bring us to tears.
I've written about some of my "moments" on this blog over the past 6 years. Some of them, even when I was writing about them, didn't seem to me to be particularly important moments, some of them were just interesting. Looking back on them now, though, I see that some of these actually were key in guiding me.
I know I haven't captured all of them, though, so I'm going to try and embark on a little series for myself to reflect on events that have stuck with me, the ones that play in my head over and over again, the ones that I now know helped get me to this point.
These won't necessarily be in chronological order, or in order of importance. They're just going to be done in whatever order they occur to me, and I feel able to take on.
The spring months of 2007 were strange for so many reasons. I had found out I was (surprise!) pregnant. The weather stayed cold cold cold through mid-May, the trees barren of leaves because of a late spring hard freeze that knocked out any vegetation brave enough to have come out. It was the second half of my intern year. I was becoming exhausted (pregnant + intern = exhaustion).
In April I rotated through the NICU, lucky enough to have two of the best senior residents as my guides through this treacherous month. The three of us got along great and actually remain solid friends.
Two experiences that month stand out from the others.
The first was a baby born far too early. She was the second child for her parents, who had a little boy under the age of one already. The mom had become pregnant within weeks of delivering her son, something she and her husband weren't really expecting or prepared for.
She came to hospital in early April having bleeding and abdominal pain. She was admitted for observation of preterm labor, and was a patient on the labor-delivery inpatient service for several days. One evening while she was in the hospital, she went to shower in her hospital room. Before she got in, though, she felt a strong cramp in her abdomen, became dizzy and nauseated. She sat down on the only seat available in the bathroom - the toilet. Moments later, her tiny, premature daughter was born, into the water.
From what I heard, there were screams of panic from her bathroom that brought a nurse running into her room. The mother was sobbing and screaming and in a state of shock. She had to be pried off the seat, and when she was, the nurse saw the baby. Help arrived, and the baby was scooped up into blankets or towels and run down the hall into the NICU.
She was not well. Being born 17 1/2 weeks early just isn't a good idea. Being born into a hospital commode 17 1/2 weeks early is an even worse idea.
At this age, you will find yourself on the brink of "viability" the fancy word we use to try and guess whether or not you can survive outside the uterus.
Your organs are dramatically underdeveloped. Your lungs barely, if at all, functional. Your skin so thin that every one of your blood vessels is visible to the naked eye, just below the surface of your skin. Those blood vessels are so immature that they often rupture and bleed with minimal trauma. Especially the ones in your brain and your eyes.
You don't know how to suck or swallow.
Your digestive system probably can't handle food entering it anyway, and digestion is one of the most taxing things your body could do.
Your immune system is hardly able to ward off infection from bacteria or viruses.
Long story short - don't be born at 22 1/2 weeks gestation. In fact, try really hard not to be born until at least 37 weeks, 40 if possible.
This little baby girl, though, for reasons no one can ever fully explain or know, was on a path to be born very, very early.
So, she was very, very sick.
Complications began soon. She required intubation and being placed on a ventilator for her breathing. She required lots of IVs for medications and fluids.
The attending on service at the time, who is no longer at our facility, had several very frank, very delicate conversations with the parents of our tiny patient. They knew, even before being told, how grim their daughter's days were, in both the immediate future and also long term.
They knew there was no chance their daughter would come home with them.
Her father said, "If God wanted her to come home with us, he wouldn't have had her be born so soon." They felt God was taking her to His home, and they were okay with their baby going there.
After a couple of more days in the NICU, and after the parents were comforted and counseled by members of the nursing staff, the medical staff and others, after they had consulted with their families and one another, and their God, they stated they wanted their daughter taken off life support so she could die peacefully.
Plans and arrangements were made so other family members could come see the baby if they wished. The parents came in the evening, and after the tubes and lines were removed, their daughter was wrapped and they held this tiny little baby, weighing under a pound, barely bigger than her father's hand.
The nurses helped them prepare the memory kit with footprints, handprints, photographs.
Then, eventually, but really after very little time, she seemed to have stopped breathing.
What happened next depends on whose story you believe. The resident who was on that night told us the next morning that she was called by the nurses to come look at the baby after the parent left. The nurses felt that she was breathing, still. The resident looked at the baby, listed with a stethoscope and also thought she heard breathing, a faint heartbeat.
The nurses told her they had seen her arms and legs moving at one point.
The resident called the attending.
He was not pleased.
He was mad that the nurses would "mistake" what they had seen for moving and breathing. He insisted it was part of the death process - firing of neurons now without oxygen.
He was mad that the resident had examined the baby, had listened for signs of breathing or heart beat.
The resident said that he told her, "You're telling me a baby I pronounced dead an hour ago is still alive? Don't you think I know what dead is?"
She said that she and the nurses felt the baby was gasping, that it was not just the small minute changes one can see as the body proceeds through death. She went on, she asked him if it would be okay to give the baby a dose of morphine, for comfort.
This was when all hell apparently broke loose, and the resident was further reamed by the attending, and so were the nurses.
He told her, "What if the parents come back in there and see you examining their baby who is supposed to be dead, or see you giving it medication?" Other harsh criticisms ensued.
No morphine was given.
Eventually, the nurses and the resident on call felt that the baby had stopped showing any signs that might be consistent with life, and the baby was sent to the morgue.
By the morning, emotions were running high in the NICU.
The seniors and I arrived for our day shift, and found a resident clearly upset, frazzled, angered and saddened by what happened the night before. She felt she was in the right, that she had not mistaken anything she witnessed with the baby. So did the nurses.
The staff, who had not been there, continued to disagree with them. He continued to hold fast that the baby had been pronounced dead, by him, and that nothing anyone told him was going to change his mind about the fact that "when I walked out that door last night, I know that baby was not alive."
Later in the day, this attending called aside the two senior residents and myself for a "meeting to discuss what had happened."
He explained to us that he could understand how people might mistake small flinches that a dead body makes for a sign of life. He told us that there is "no reason to examine a patient after they are pronounced dead. Ever."
And, even more, he went on to tell us that the resident's request the night before to give the baby a dose of morphine was almost reprehensible. First of all, why would you medicate a dead patient? Second of all, he told us that there is no place in neonatal medicine for administration of morphine. He said it was tantamount to murder. Said that if we ever gave a neonate morphine that "lawyers would be all over it," and we would be murderers.
I was in shock.
First of all, even though I had limited experience in the neonatal ICU, I knew he was just plain wrong about not giving neonates morphine, or any other medication to prevent or treat pain or distress.
My limited experience with palliative care at that time told me that no patient, tiny, huge, old, young, should suffer while dying.
And my mother's heart, even though my baby was still inside me, knew that it would be more traumatic to watch my child die gasping for breath, uncomfortable, anxious, struggling, than to think that a dose of medication given to help keep my baby comfortable might shorten her already ending life. If I knew my child was going to die, and was, in fact, dying before my eyes, I would be demanding medication to keep the child from suffering.
While the attending was worried that a family would sue him because medication was given, I had to bite my tongue, hard, to keep from pointing out that he could just as easily, and likely more successfully be sued, for inflicting pain and suffering on a patient, and the lingering scars that could leave on a family.
This was a moment I knew that pediatric palliative care had a long way to go, and felt myself wanting to start this kind of practice immediately.
I saw the lack of knowledge, and the dangers of lack of knowledge and the dire consequences it might have on a patient and the family.
More, it made me want to specifically go into the realm of perinatal and neonatal palliative care. To provide a service and fill a need that was glaringly void.
Fortunately, I don't think those parents ever had any idea about the drama that ensued after they left their daughter for the last time. For them, their daughter died peacefully in their arms. They said their goodbyes, started to make their peace.
It's the way every family should feel when they have a dying child.
But it's also the way everyone who has cared for that child should be able to feel. That it was a peaceful death, a calm death. A death without suffering - because that's what we go into this field to do - stop suffering. That night, no one involved felt that they had done their job, had fully prevented suffering, and to this day it motivates me, gets me fired up, and reminds me why I have to do what I'm doing.