Luck egalitarianism

“She smelled of milk and urine. Chacko marveled at how someone so small and undefined, so vague in her resemblances, could so completely command the attention, the love, thesanity of a grown man.”

-Arundhati Roy from The God of Small Things

One
Luck has something to do with it.

I know the answer to the nagging in my head, but am dissatisfied with the answer offered up by my physiology textbook: Breathing is intermittent in the fetus and becomes continuous after birth. The mechanism responsible for this transition from intermittent to continuous breathing is unknown.

Two days earlier, twenty minutes before I was to be taxied to the airport in Port-au-Prince, the baby boy handed to me did not breathe continuously. He didn’t breathe at all. Born a few hours earlier at home. I assumed home was in one of the hundreds of make-shift tent cities. I did ask if his baby cried after he came out of mom. Yes. He didn’t suckle well and stopped crying. Dad decided to get help. Climbed on to a moped with his baby wrapped in a blanket. Must have tucked him under one arm and rode between piles of rubble to the closest health care facility.

People at this other place tried to help his baby boy breathe. They pushed air into his mouth like you are doing. After a few minutes, they said that they couldn’t help anymore.

“Go to the University hospital.”

From a shirt sleeve pocket, he pulled a crumpled white piece of paper with some writing scribbled on it. I gathered it documented this last visit. They took the time to hand him a note before they sent him on his way.

Thanks for the note. Okay, now what? Swaddle my baby. Tuck him under one arm. Hop on my moped.

Two

L’Université d’État d’Haïti has been the main teaching hospital for all of the country for decades. Many, if not most, formally trained Haitian health care providers have spent some time in Port-au-Prince at this institution. As important as it is, it has suffered from neglect over many, many years. The earthquake made matters exponentially worse.

Dad must have been directed to the pediatric service when he arrived. There, a few Haitian pediatric residents and nurses were doing what they did every morning. Tending to an overcrowded patient population of babies, children, and parents. The pediatrics building was left uninhabitable. All inpatient and outpatient care took place on a street where the tents had been erected.

In the ICU tent twenty beds filled a space probably meant for 10 military style cots. Metal cribs and full adult hospital beds were jammed next to one another to fill every possible nook. Parents slept on the adult beds with their sick children or underneath the cribs. Siblings too. Two large green canisters stood in the middle of the tent, like plant stalks. An array of criss-crossing tubes extended from the roots to deliver oxygen to several of the sicker patients. Growing organically from the mother gas source. Outside, hundreds of parents would line up starting at six am and stand in line for hours so that they could get their children seen in a couple of smaller tents were used to run the outpatient clinics. Moms would fan their kids under the shade of trees on the side of the road. Feed them some milk or juice while they waited. Smile at us passers-by. They seemed to possess a bottomless well of patience.

Power cords with extension wires littered the street-hospital floor under the canopy.

When it rained, we were only modestly concerned about electrocution. A single 1950’s style metal desk with two worn out chairs greeted visitors to the entry way and was usually occupied by some of the medical staff. A single, large metal fan that had collected enough dust and soot in its circular cage to look bearded hummed a breeze toward the desk.

Several of the US nurses who had accompanied me settled on this rough analogy for their nightly shift work helping the Haitian staff: it is 100 degrees F outside, at least 70% humidity without rain, you and five of your closets friends are wearing whole body spandex, and you need to drive 8 hours to get somewhere important. The car that you are about to get into is an old Ford Pinto that has been baking in the sun. The air conditioning is broken. The windows won’t roll down. The seats are black vinyl.

A bottomless well of patience and resiliency. In the popular media, this last word has been thrown around a lot to describe the character of the Haitian people. It is insufficient. Their adversity is truly absurd. Sense cannot be made of the scene in the pediatrics tents months after the earthquake struck, nor elsewhere on that campus, let alone outside its walls. It’s worse than a bad movie. It’s what I’d imagine an early David Lynch film might look like on a bad hit of acid. Beyond deeply disturbing.

Clinton has spoken of “building” Haiti back better. The alliteration is meant to be catchy so that it sticks in us do-gooders minds as the images fade. Dr. Gupta is long gone, having done his bit to show us how heroic he is. Running through the streets, saving a baby with head trauma along the way. Conveniently, the camera crew in tow. Now that news cycle has moved on. “Surgeon general to the world.” Give me a break. We elites love to disguise our narcissism don’t we.

The local medical staff hadn’t been paid a dime in many months even prior to the earthquake. They suffered unimaginable losses during the earthquake. They still came to work.

“We love our children. They love us too.”

What so many of us think as charity, they think of as duty. What so many of us think as missions, they think of as jobs. What is spectacle for a few minutes is reality for decades. I get to go home. They are home.

Three

The housestaff didn’t have the means to treat the little baby boy brought to the ICU tent that morning. They sent dad back past the nursing school down the street to the E.R. It was serendipity that we hadn’t yet left for the airport when an American nurse came running out to our housing structure.

“Can you help? Please!”

That’s how I became attached.

As dad continued to relate his story, I hypothesized what probably transpired in his home after his son was born. My trusted physiology textbook puts it this way: If lung expansion does not occur in the minutes following birth, and the infant is unable to establish ventilation and pulmonary perfusion, a progressive cycle of worsening hypoxemia, hypercapnia, and metabolic acidosis evolves….The initial phase of asphyxia is marked by increased respiratory effort. This is followed by primary apnea, which lasts approximately 1 minute. Rhythmic gasping then begins and is maintained at a rate of 8 to 10 gasps per minute for several minutes, after which the gasps become weaker and slower until they cease, which is called secondary apnea.

Secondary apnea. Those are worrisome words in my line of business. Still, resuscitating this little baby boy was not difficult for me and the others assembled around the gurney. I’ve done it myself several hundred times over the course of a decade and like anything that you’ve practice over and over again, the sequence of events becomes automatic.

Assess the airway and make sure nothing is obstructing the narrow soft tissue passageway to the lungs. Breathe, that is push air, effectively into the baby by rhythmically pushing a self-inflatable bag and making sure the seal you have with the mask attached to one end of the bag fits securely over the baby’s lips without obvious leaks for the air to escape. Listen to hear that the breaths you are delivering are transmitted into the lungs. Look with your eyes to see the baby’s chest wall consistent rise and fall every time you press on the bag and release it. If you are not moving air, adjust your hands and troubleshoot. All these things done reflexively.

It’s a convenient thing about reflexes too. They come in service in situations that you could never imagine. March 24th, 2006, on a terrifically sunny afternoon in San Francisco. My wife had gone into labor a few hours earlier at home. This being our second child, we both felt fairly nonchalant about what would happen next. So much so that my wife told me to drop our older daughter to school after I dropped her off at the hospital and then come back to help her through labor and delivery.

We both knew that I wasn’t really there to help in the fashionable Lamaze sort of way. My help was to make sure the anesthesiologist on call got an epidural in fast that worked well, and that if needed, she or he would be prepared to give a little extra IV narcotic should the pains of muscle contraction be too much for my wife to bear. I was happy to oblige her. Despite being a specialist in neonatal medicine, and having read and seen all the negative stories about fetal exposure to narcotics around the time of delivery, I had never really been too bothered. I spend most of my working hours asking nurses to administer large amounts of narcotics and sedatives to babies under my care.

Pain medicine is a really good thing when someone is in pain, even when that someone weighs about a pound. If my wife needed pain medicine, I was confident that her little fetus, our future baby, would not suffer permanently should she get a little wiff. She might even enjoy the high. We could bond around that moment when she was a teenager. Maybe I could convince her there was no need to experiment since she had an early taste of the good stuff.

This time around, she got her epidural in early and it worked really well. So well that she fell asleep. Her labor proceeded smoothly. The morning was shaping up nicely. Our only disappointment was that our OB was off this day for deliveries. We were told to expect someone else from her practice group to assist daughter number 2 into the world.

The same thing had happened with our first, Iman. Irritated at first, we ended up loving her substitute deliverer. Iman’s heart rate dropped precipitously below 80 while she was beginning to crown. The stand-in looked at me and kind of queried me about an episiotomy and forceps. In retrospect, it wasn’t really a question as much as a polite assertion to a fellow medical traveler. I am sure she was thinking this dad knows what’s up, let me reassure him that I am getting his kid out ASAP.

Thank goodness for confident, competent, replacement doctors.

With number 2, our regular OB opened our door at around 11 am with a big grin on her face.

“I thought you were going to deliver when I was on call?”

After examining my wife, she was sure our latest addition would be with us in a matter of an hour or two. She cleared her lunch schedule and told us that we were going to have this baby before 1pm. How relaxed and casual it all seemed. I am going to go see another patient, sign a letter or two, maybe grab a snickers bar, and after I wash my hands, I’ll be back just in time to deliver the most precious little thing in the world to you. Just another day in the office. It happens subconsciously, our setting of expectations. Established long before we are cognizant of the cementing.

My karma seemed well aligned that morning. No pain for my wife. Her doctor. Number two looking good. A sunny day.

Zaina’s heart rate didn’t drop like Iman’s. She came out just fine except for the cord wrapped around her neck. Our confident, competent OB dutifully disentangled that noose. She was a big baby. Eight pounds eight ounces. The magic of gestational diabetes. Hard to navigate the canal of a thin, five foot four (and a half according to my wife) woman without running into the gelatinous rope. She even gave the obligatory cry after she had a green bulb suction device jammed into her mouth and nose to clear the mucous. One cord was cut while another was sewn together.

She was placed on my wife wet and covered with yucky mom slim. A very California move. Personally, it grosses me out. I can never seem to wash my hands enough after handling a freshly delivered baby.

I am not sure either was really aware of the other’s presence. My wife was tired and sleepy but she was resting easy. Our baby was also resting easy.

“Is she breathing, babe?”

“Huh…what?…I think so…I don’t know?…You look!”

“She’s not crying, she looks blue…Give her to me!”

The poor nurse had no clue. He might have known I was a doctor, but he surely didn’t expect me to grab my baby and run her over to the resuscitation warmer. The thing in the back corner of every labor and delivery room in the US that no one pays attention to unless crisis strikes. Then it becomes the center of the universe for at least a few minutes.

“Turn on the oxygen! Hand me that bag! Get me suction.”

Hands assume a comfortable working position. Head of baby closest to my hands. Rub the back, feet, give a little squeeze to stimulate a response. Nothing. Next move. Right hand pinches the non-self-inflatable green anesthesia bag that we have in the fancier hospitals in the U.S. so that I can titrate just the right amount of air into the balloon before pressing. Love those bags. So sensitive. Much more elegant than the self-inflating kind. Left hand cupping the mask on the face gently but firmly, with two fingers extended across her jaw line to provide support.

“Breathe, baby, breathe.”

There are familiar sirens going off around me. Our nurse follows my commands looking rather perplexed.

“I’m a neonatologist. I know what I am doing….c’mon, kid.”

A gasp. A cry. Muscle tone perking up, she’s flexing her arms and legs. She’s crying consistently. She’s down right pissed. The most welcome sign in newborn medicine after delivery: a crying, angry baby means a vigorous baby, and most often our work is done. The door swings open and a rush of 3 people run in. It had been maybe 30 seconds since the siren went off.

“WHAT are you doing, Dr. Sayeed!”

“She went apneic on me. Who would have guessed?”

“Only your baby, only your baby would need you to help her…would you like me to take over now?”

Truth be told, it was really hard for me to hand over the care on this baby to my friend who had worked with on countless occasions in this very hospital. I knew she was terrific. I knew that this baby was fine. She just needed, as my textbook teaches, to have her lungs expanded and her cycle of hypoxia broken. That was done. But suddenly, she became Zaina Navin Sayeed, not just another one of my patients. I was more than professionally attached. My second girl, my precious little thing. I didn’t want to hand her over to anyone. This kind of attachment sticks like super glue.

I would have ridden on a moped too.

“I’ve got to remember to not accept patients whose husbands are neonatologists in the future…”

That made me laugh. Nervously. Our OB knew precisely how to cut the tension just as she knew how to deliver our baby. I knew things were fine. That they would continue to be fine. But we were lucky. Zaina was lucky. Lucky to have me ready to pounce. Lucky to be born in that hospital and have others ready to pounce. Lucky for a lot of things. The things we take for granted.

Four

“Someone feel for a pulse…the femorals or umbilicus.”

“I don’t feel anything…I am starting compressions.”

We push on the heart when we believe that it is not pumping enough oxygenated blood to the vital organs. Which organs are vital? Well, ultimately, all of them, but we tend to rank vitality as follows: brain and heart first and second. Descartes would approve. My cardiology friends tend to reverse the order. Either way, can’t live long without the latter and can’t live well without the former.

My pulse checker was not a pediatrician. He was an adult E.R. doc, I think from the west coast. Nice, amicable guy. Handsome too. Made for a television reality show. Came a day earlier. Part of the on-going volunteer effort by one of the humanitarian aid outfits. They had staffed the University’s E.R. continuously 24 hours a day since the earthquake. Two week shifts for most volunteers. Hard work. Like me, lots of stories to tell back home. Like me, not super glue attached to Haiti.

“Please stop compressions. Someone listen to his heart, tell me can you hear a beat?”

“Yes, yes, it’s beating, but not very fast, doesn’t seem like more than 60 a minute.”

Sixty beats a minute is a magic number in newborn resuscitation. Give epinephrine after 30 seconds of chest compressions if the heart rate stays below 60. Give another round 30 seconds later if the rate stays below 60.

“I am starting compressions again.”

“It looks like the baby is moving air. He’s got good chest rise.”

“But he isn’t taking any breathes on his own. His muscle tone sucks…he’s totally flaccid.”

“We need a line.”

“I’ll take over the airway.”

“Get me a 24 gauge angiocath and a flush, please.”

Just like with bag mask ventilation, I’ve put in hundreds of IVs in babies. I used to do it everyday when I was in training back in San Francisco to make sure I felt supremely confident with my skills. I’d ask the nurses who were oftentimes far better than me if they wouldn’t mind me trying. I had to woo them to do this. They were no different than one would expect of any protective mother. These were their babies. Attachments came within a matter of hours in our NICU. If I was going to screw things up and cause unnecessary pain, I’d better pay some serious respect.

This is one aspect of intensive medical training that I have always found hard to describe. Not the age old ethical dilemma about how doctors-in-training need to practice to get good and yet, this means at times causing unnecessary pain and screwing up. The key is there is the word “unnecessary” of course. If doctors-in-training or nurses-in-training never got practice, we’d all be in a lot of trouble eventually. At least that’s how the argument goes.

But that’s not what makes training in medicine so much fun sometimes. Why it’s enjoyable. It’s the community we’ve organized for ourselves. It’s addictive after a time. Working alongside nurses and other doctors and other staff at all hours of the night with really sick patients, and trying our best to do right by them — there’s something peculiarly joyful in the shared experience. Asking a veteran nurse who loves to give you a hard time whether she’ll let you try an IV on her patient. Knowing ahead of time that you’re going to have to do some fast talking and drop a few compliments to get your way.

It’s more than just fun — it’s therapeutic. To find a moment of levity, to laugh at one another, with one another, when faced with a job that every so often offers up life and death crises.

Truth is, despite all the practice, I don’t have as much confidence as I used to about placing IVs. One thing about working in an academic hospital, I find I am not needed nearly as much at the bedside helping to perform procedures. Instead, I manage from above. I spend oodles of time counseling parents about what the diagnosis means and the prognosis for their child. I help them to adjust to an unexpected sometimes life-altering turn of events. It’s a much harder skill to acquire than placing IVs. No textbook to open for answers. No dummies to practice on. I have found the hospital’s sponsored “enhance your communication skills” workshops unhelpful. Actually, I’ve never bothered to attend one.

I only get called for an IV when lots of people have tried, failed and are now worried about whether any more “sticks” should be attempted. The term “unnecessary” starts to carry more purchase. The choice is left to me. Either I can try myself as the senior physician, call it a day, or ask the surgeons for help if it is a critical line needed urgently. The irony of the situation lies in the fact that by the time I get called, all of the easy veins have been worked over leaving me not a whole lot to feel good about. I rarely try anymore.

Lack of veins wasn’t the issue with this baby boy. He hadn’t had anyone try to put an IV in him and I saw plenty to go after. Unfortunately, he also looked like he was in shock, so the blood perfusion to his distal veins was not exactly robust. This is one of the problems with secondary apnea, it eventually leads to circulatory collapse.

“We can also use an ET tube. Someone get a 3.0 tube and a baby blade, Miller zero if you have it just in case I can’t get this IV. Someone look up the concentration for epi through the ET tube. I can’t remember if the latest guidelines have changed the dose if we give it IV versus tube.

Another thing about attending at an academic hospital. I rarely have to write orders anymore. What’s the drug dose? Someone is always there to look it up for me. Sometimes, I feel superfluous to the action. Am I really needed today in the unit? If not, I’d much rather go for a swim with my daughters.

I struggled to hit a hand vein on my first two attempts.

“Someone listen to the heart rate.”

I was hoping for a needle stick induced adrenaline response.

“It’s still slow.”

“Draw up epi for the ET tube and for an IV, and someone run and see if you can get Sally from our house. Here give me those… let me listen.”

Two sticks wasn’t a lot. I’ve personally maxed out at thirteen attempts. Impossible to forget that night, that baby (actually, they were conjoined twins), the nurse who worked alongside me. I wasn’t giving up now, but knew I wasn’t the most skilled set of hands in close proximity. Sally was just one of those veteran nurses that I have come to treasure over the course of my career. A few are built in just such a way. Unflappable when you need them the most. Unfazed when the shit hits the fan. Need an IV, I’ve got it. Exudes confidence in a crisis when you are paying extra special attention to the tone of voices around you. Neonatal medicine, like all of medicine is a team sport. There are no heroic doctors without heroic nurses. And there are no heroes without someone to care about.

“His color looks better.”

“His heart rate is definitely over 60. Stop compressions for now. Let me listen again.”

“He’s got nice chest rise.”

“His heart rate is over a hundred.”

“But he is still not taking any breaths on his own.”

Even though no code alarms were ringing this sunny morning in Haiti, Sally seemed to show up out of thin air in 30 seconds.

“Can you get an IV?”

“I’m on it”

“Okay, guys, let’s evaluate the situation…we’ve got this baby, whose heart rate is now over a hundred, he still isn’t taking any breaths on his own, but he looks better in terms of his perfusion.”

“He’s been down for a long time…”

“I could intubate him…and we could transport him to another facility that has the means to care for him…”

“Not sure anyone will take him…”

“How long do you think he wasn’t breathing for?…He has to have had serious brain injury don’t you think?”

“Dad says he delivered at three this morning. It’s what eight o’clock now?”

“We have no idea how long he’s been deprived of adequate oxygen…whether and how much he’s been breathing on the ride over.”

“Well his heart rate has responded to our efforts…”

“Is he taking any breaths on his own?”

Our airway man stopped breathing for the baby. I listened to his heart. It was over a hundred beats a minute. If we kept breathing for him, it wasn’t likely to slow down anytime soon.

“He’s not breathing on his own…oh wait, maybe there was a gasp.”

We watched for several seconds. It certainly wasn’t continuous like I had hoped. He hadn’t read my textbook. Or rather, he skipped forward and only bothered to attend to the bit about secondary apnea.

“I could intubate him and we could breathe for him. What do people think?”

“I’m in. Hand me the flush.”

“Grab a bag of D10 and check his sugar.”

Man is Sally good. Boy do I feel incompetent.

“I don’t know. What are the chances he is going to well?”

“I know. I know. It’s just that I could… it’s hard to know…I know….”

What I knew better than everyone around the gurney, but had a hard time acknowledging unlike everyone around the gurney was the prognosis for this little boy. It was poor. He probably had sustained permanent damage because of a lack of blood supply to his developing brain. Even under the best of conditions, we worry about kids who come in like this back in San Francisco and Boston. If they have had profound oxygen deprivation for a long period of time, should they survive, they often survive lacking even the most rudimentary abilities like being able to suck, swallow, breathe consistently, let alone walk, talk, and think.

“His blood glucose is 156”

“Nice stress response. His adrenal axis seems to be working.”

Sustained oxygen deprivation to the brain has been a particularly devastating condition in clinical newborn medicine. Until recently we really had nothing to offer in terms of treatment. We just had to provide supportive care, meaning breathing for babies, feeding them, and monitoring them until they sort of declared themselves in terms of degree of permanent neurological injury.

Counseling parents about the prospects for their child after these kinds of injuries has to count as one of the least enjoyable tasks in the whole wide world. There’s no easy or elegant way to do it. Like I said, no communication class makes the task easier. All the compassion in the world cannot camouflage the words that come out our mouths: permanently injured, may not walk, difficult to know how much traditional schooling she’ll be able to achieve.

Several high quality studies from the earlier part of this past decade demonstrated the efficacy of the cooling neonates after an asphyxiating event. As is the perpetual wonder of modern medicine, now many babies with this kind of injury and who can reach a hospital within a few hours after birth are being cooled to a core temperature of about 33.5 degrees Celsius for a couple of days. If we were back in Boston, I would have seriously entertained chilling this latest patient of mine.

Everyone who I’ve spoken to with growing experience with therapeutic hypothermia has been impressed with the results. Anecdotally, we share stories about babies who seem so much better than we would have expected with their up front presentation. Secondary apnea doesn’t feel quite as worrisome as it used to be. Parents I felt almost certain I would have had to give a painful prognosis to are now taking home their children with minimal clinically detectable injury. The fancy magnetic resonance images we now routinely take of these babies’ brains often reveal much less damage.

Cooling isn’t a cure. Some babies are still terribly injured. But some are not. Before we just had to watch and wait. That’s hard in any line of business. It sucks to feel helpless, to feel like a bystander when bad stuff is going down.

In intensive care, we’re not trained to do that well or for very long.

Five

Cooling. It must have been over 100 degrees in Port-au-Prince that morning.

MRIs. It costs patients’ one hundred US dollars to get a cat scan in Port-au-Prince. Out-of-pocket. There’s that damn equity gap again.

“What do people think? Should I intubate him?”

“What do you think the outcome will be?”

Reflexes are not just physical. Here’s a classic reflex in clinical medicine when no one wants to make a decision. Ask the question in a slightly altered way back to the questioner. I was the expert in this situation. In more ways than one.

Not only am I a neonatologist, I am a so-called “medical ethics expert” at an academic medical institution. I even have a faculty appointment that calls attention to the same. I’ve published a few papers and a book chapter on end of life decision making for newborns and children. Thankfully, no one around the gurney knew that, but I couldn’t hide from the fact that this needed to be my call. Or maybe it didn’t, but it felt like it all the same.

My karma seemed well aligned that morning.

I’ve felt like I’ve owned a lot of difficult decisions in the US. I’ve let many babies die who could have survived longer if we kept pushing. I felt mostly good about these decisions and continue to do so. Truthfully, not because I always felt it was the best possible outcome for the baby him or herself to die, but because I understood his or her parents to tell me that it was the best possible thing for their family at that time under those circumstances.

It is clear to me that we regard babies differently than older people. They don’t talk back, they don’t resist our impositions.

Still, it’s an easy finesse for us to assume that a life full of handicap mental and physical, even when severe, can’t be a life worth living and I don’t buy what I am sometimes asked to sell anymore. I’ve certainly seen some children and their families find joy out their shared love for one another even when outwardly expressed in the simplest possible ways. Feeding. Touching. Smiling. It’s surely not what we’re built for but sometimes it is enough for some to find fulfillment even if for only a few months or years.

As I’ve gotten older, I’ve lost confidence in believing I know what outcomes in live are bad and what are good. Who am I to say that a life that leaves a child in a wheelchair, and with a preschooler’s mental capacity is worse than death? Yes, there will be huge burdens on others, but some people are prepared to accept such burdens. Yes, it will cost communities and societies more money to care for those incapable of caring for themselves.

There also opportunities. Isn’t it at least possible to discover a deep sense of community, of satisfaction, in ways that are less dependent on our more predictable expectations? It’s hard to quantify the value in just caring for someone who seems so different than you. Who decided that the better measure of human success is how productive our children are, what micro and macro economies they generate, how many goods they are able to acquire? It’s a decent measure, but it’s surely not the only one. Our means and their ends? Or is it the other way around? Easy to confuse what’s supposed to matter.

In the US we’ve constructed a messy dance to accommodate such complicated perceptions — decisions about death are not really our decision as physicians or nurses to make anymore. Our job is to merely convey the information in a meaningful way so that parents can make the choice for themselves.

Meaningful.

Yes, we can keep your baby on the respiratory for many more weeks or months, yes, we can place a hole in her windpipe so that she can even have a smaller machine do the same in your home. Yes, we can also put a hole in her stomach and you can learn to feed her through that tube and she will grow. No, we can’t fix her brain damage, but there’s a chance with a strong supportive network that she’ll gain some functional skills.

What do you think? Do you want us to keep going and do these things? Or are you ready to make the decision to let your child die? What would I do? Well, that’s not really relevant because my values and priorities might be very different than yours…surely you understand. I know how hard this decision must be, and I want to help you fulfill the goals, as limited as they may be at this point, for your baby. If that means a peaceful and dignified death today, I am with you. If that means forging ahead and continuing with the interventions, I am with you. Solidarity in death, solidarity in life. It’s your choice.

Meaningful. The approach that has evolved in the US has not been without its critics. Many of my colleagues from elsewhere laugh at the dilemmas we’ve constructed for ourselves on this side of the Atlantic. You Americans never know when to stop. Autonomy gone awry. You cannot appreciate that you are doing the parents no favors by forcing them into an untenable moral position. In Europe, if the quality of life we think the child is going to have is bad, we have no problem making these decisions. We make the decision for them and that’s that. Call it paternalistic if you want. We are comfortable with it. We prefer to call it benign paternalism. You Americans give parents a fool’s choice. Of course, they choose to keep their babies alive. What parent is going to own the decision to let their baby die? They’re super-glued. Then your passion with individualism leaves them constantly having to fight for a minimal social support network to help them manage once you’ve discharged them months later. You call it autonomy. We call it irresponsible.

Six

I wept uncontrollably at the airport when my colleagues finally found me. I avoided them throughout the baggage screening, ticketing, passport control. I ran from the anticipated consolation. Hid with my face toward the bar on the balcony of the pristine air-conditioned American Airlines terminal. I didn’t want to appear vulnerable. Minimal promotional value in academic medicine when mostly what you do is show you care.

“So much for me and my detached enlightenment….”

“It’s okay buddy. You made the right decision.”

“Now you guys can officially say I am human….just don’t tell anyone back home.”

“It’s okay.”

I say to myself that death is part of the cycle of life. Suffering comes with existence, with attachment, with cravings. That if I want to get over the psychological torment, I need to expand my cosmic world view. Break out of linear, biographical thinking. That’s what I imagine Siddhartha achieved sitting under the Bodhi tree after 49 days. I think Buddha got it closer to right than most when it comes to how we might come to grips with all the human misery in this world.

The problem is I am not religious. I am not mystical. I don’t believe in reincarnation. I cannot be a Buddhist in the most important sense of the desired affiliation. And, I certainly don’t want to wear one of the dozens of loudly colored neon pink blue or green t-shirts proudly on display in the American Airlines terminal proclaiming the redemptive powers of a long-gone Savior. We’re going to…coming back from Haiti. Over and over and over again. “Rebuild. Rejoice. Redeem.”

“Another beer, please.”

Seven

“Okay, you can stop breathing for the baby. Could you interpret for me?…Sir, I am so very sorry, your son is dying. I wish there was something more I, we, could do. He will not breathe on his own. We’ve watched him for many minutes, and tried to get him to wake up. But, he won’t. I am afraid he might not ever breathe on his own. We’ve tried everything we can here and he just won’t respond. I am so sorry for this….”

How does that sound in Kreyol?

Silence. Is the betrayal in my voice so obvious?

“Can you get some morphine? …point one per kilo, so say point three milligrams.”

I’ve never forgotten the dose for pain medication.

“Sir, your son is taking the occasional gasping breath now, but that will stop very soon I am afraid…I want to make sure he isn’t feeling any pain. I am going to give him some pain medicine, then we can take the IV out and wrap him up so that you can hold him as he passes on. Would you like to hold him maybe?”

How does that sound in any language? When you don’t believe in an afterlife, is it wrong to say “passes on”? What if he wants to know to where his son is passing on?

Silence.

“I am so very sorry for your loss, sir. We all wish we could have done more to save your son.

Were his expectations the same as mine?

Eight

The drug having been delivered, I handed this baby boy to his dad. I don’t know how much or how well he understood anything that I had said, anything that had just happened. Some Haitian nurses assisted me with this next strangest of all tasks. Leaving him with his dead son and saying goodbye. They sensed how awkward the scene was. Gracefully stepped in. Encircled baby and dad. As if baby was their son, and dad, their own brother. Nurses are the same everywhere. Bless them. With what I don’t know. Just bless them. My work was done. My failure complete. Their work continued, their grace on-going, their patience, endless.

Then, and only then, with his baby in his arms, did dad start to cry. No suggestion to get back on his moped and try somewhere else, no scribbling on a piece of paper.

I ran out of the E.R. suffocating.

In the US, we have whole multidisciplinary teams dedicated to palliative care. Nurses, doctors, social workers, chaplains, the list goes on. Some do a really fine job helping families and providers like me cope with the death of babies and children. We try and nurture the process with families as we start to recognize that we are running out of reasonable therapies to offer. It can take days, sometimes weeks, but most families come to see the wisdom in letting go after a time.

After babies die, we set up bereavement meetings months later with families. Just to check in, to reflect, to share good and bad memories. To show we cared and still care. To stay in touch if they’d like too. Another opportunity for community, hard as it can be. What I used to dread I now look forward to. Reattachments help soothe me.

People will ask me how “How was Haiti?” and I’ll say something like “It was okay…challenging…hard at times.” Knowing that the question itself is nonsensical despite being asked with the best of intentions.

How was Haiti? Do you have a few hours to listen to my real answer? Or would you just prefer the not-so-polite one liner? Here let me summarize my last few minutes in the hospital with my last patient for you dear inquirer: Good luck dad getting back to your tent safely on your moped with your dead son wrapped in a blanket tucked under one arm. Good luck telling your wife her newly born son is dead. Good luck finding a place to bury your baby tonight.

Luck has something to do with it.

Epilogue

I’ve learned to live with the contradictions.

After daughter number two, my wife and I decided if we ever had another child, we’d adopt. I’d always thought I’d like another girl but she prefers a boy. Gender variety. I told her if we ever are to act on this, I’d get to name him. We’ve alternated each time so it’s my turn anyway. Iman equals faith. Faith in one another. Zaina equals beauty. There is indescribable beauty to behold in this world. Every morning I wake to it through them.

His name would be Siddhartha. He who attains his goals in life. The more time that passes, the less I think we’ll ever come around to adopting a third. Unreasonable, unfair expectations would inevitably be placed.

I vacillate between anger and acceptance. Between wanting to scream and savoring every minute I have with those around me. Between feeling somehow responsible, at least complicit and feeling detached, academic. It’s so much easier to just be another observer of and commentator on our collective human predicament. Get a paper published. Draw the occasional accolade. Good for me. Good for my career. Good for my family life. The help to others is an added bonus. It’s the winning narrative that I seem to have surrounded myself with. Consciously and then some.

Back in Boston, I spend much of my time teaching medical ethics to students. Philosophy has a lot to say about ethics. I am an amateur when it comes to critical reflection. How weought to relate to one another. What we owe one another. Many times I am moved by the sublime argument before me. The profound insight that seems to miraculously emerge from just a few paragraphs pieced together in perfect order. Words masterfully capturing exactly what I believe to be likely closest to true. It’s intoxicating. Rapturous. Like poetry, fiction, music, art, sex, sometimes, I suspect, depending on how one is peculiarly bent.

Other times, like today, I feel the academic enterprise suffers from self-absorption. I find the discourse positively frustrating. At least, tediously analytical. Puzzle solving for puzzle solving’s sake. Problems of our minds for our minds. Is the moral theory too demanding or are we just weak in the will? Unanswerable. So what’s desperately needed is another conference, another book, more words.

What’s needed is a plan of action. Just lose the salvation slogans on the t-shirts, please.

It’s unfair of me. Ideas and explanations matter. Coherence, cogency matter. No excuse for my anti-intellectualism. The more it rears its head, the less secure I feel. Morality isn’t all or nothing, lives are continually constructed and deconstructed, our biographies are necessarily filled with nuance. That’s what makes things so interesting, after all. Still, days like today encourage my love of Wikipedia. Man’s source for simple, straightforward answers. Here’s what it has to say about “luck egalitarianism”: Luck egalitarianism is a view about distributive justice espoused by a variety of egalitarian and other political philosophers. According to this view, justice demands that variations in how well off people are should be wholly attributable to the responsible choices people make and not to differences in their unchosen circumstances. This expresses the intuition that it is a bad thing for some people to be worse off than others through no fault of their own. Luck egalitarians therefore distinguish between outcomes that are the result of brute luck (e.g. misfortunes in genetic makeup, or being struck by a bolt of lightning) and those that are the consequence of conscious options (such as career choice or fair gambles). Luck egalitarianism is intended as a fundamental normative idea that might guide our thinking about justice rather than as an immediate policy prescription.”

Not bad, I think. No need to go beyond to particulars, to the conceptual problems others are keen to debate. Especially that last clause. Wisdom guides us, that’s about it. Helps us negotiate the unanswerables encountered throughout life. For me anyway. Enough really for me to state my closing argument. For today, anyway.

Read Q&A with Sadath Sayeed here.

Written by Sadath Sayeed