Category Archives: Neonatal ICU

The Preemie Experiment: Should the Cost of Saving a Preemie…

I discovered an interesting blog written by the mother of 2 children who were both preemies in the NICU.  It is called “The Preemie Experiment” and it gives an interesting perspective on the challenges faced by the families of NICU grads.  We all cheer when a “million dollar baby” , born at 24 weeks gestation, goes home from the NICU.  Unfortunately, it is not always a “happily ever after” fairytale ending for the family.  They are often left with ongoing medical costs and struggle with care issues.  In the worst cases, they are left with childen who will be dependent on them forever, and have to face the issues of what will happen to them after they are gone.  This blogger tells it like it is.  She loves her children immensely and is completely focused on their well-being, but she doesn’t pull any punches about how difficult and challenging it can be.

This post caught my attention because of the current debate we are having on the costs associated with healthcare. 

The Preemie Experiment: Should the Cost of Saving a Preemie….

This was the comment I made on the above post:

Interesting subject. I’m a former NICU nurse and at one time believed that everything possible should be done for every baby over 24 weeks gestation. Then I started working in home care and after viewing life from the family’s perspective, started to feel differently. The cost should be viewed not simply in financial terms, but the overall cost to the family’s total resources. That said, I think that very few working in neonatology have a clear view of what the ongoing costs will be to the family.
I don’t think our society should ever dictate who should and shouldn’t have babies . . . but I do think the ultimate decision about resuscitation of a premie should be an informed decision made by the parents themselves.

A neonatolgy fellow that I worked with some years ago was having contractions at 26 weeks. She said that if she delivered, she did not want her baby resuscitated. The hospital told her that would not be possible, they would have to do a full resuscitation. She and her husband rented a house in the desert where she planned to deliver away from medical attention.

Parent who are at high risk of a very premature delivery should be fully educated about the possible outcomes and be able to make an informed decision about what they want done. If they want everything done, then it should be done; if, however, they choose to let nature take its course, that wish should be respected.

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Baby Sam’s baptism, Dr. Raymond’s baptism by fire

Working on a neonatal intensive care unit taught me to rely on instincts; not so much my own, but in particular the instincts of a mother who has recently given birth to a baby.  For all the downside of post-partum hormonal fluctuations, I have observed that this particular hormonal state seems to be nature’s way of facilitating the instinctive, almost psychic nature of new mothers to know what is best for, and sometimes when something is wrong with, their babies.

It was a sunny summer evening when I arrived for my 12-hour night shift in the NICU of a large metropolitan hospital.  I checked the break room to make sure a fresh pot of coffee was brewing, scanned the bulletin board for updates, and noted with dismay that the neonatal fellow on call was one of my least favorite doctors. Dr. Raymond was a large, lumbering man who I referred to (behind his back) as Surly Burly.  Neonatal nurses, perhaps more than any other specialty, run their units with an iron fist in a velvet glove and prefer their neonatologists to be; 1. compassionate , 2. smart and competent,  3. collegial and collaborative with the nursing staff.  Ray had none of the aforementioned attributes.  His monosyllabic conversational style and massive hands made him appear to be more well-suited to being an Orthopod rather than threading tiny arterial lines into 500 gram human beings.  Worst of all, we knew that if we had to wake him up from the call room, he would stumble into the unit cranky and disoriented and it would take him 15 minutes to wake up enough to be of any use to anyone. He spent as little time on the unit as possible, interacting only when absolutely necessary with staff and patients. We all wondered why he had chosen a neonatal fellowship, he certainly didn’t appear to enjoy the specialty or even show a keen interest in it.

At 7:00 pm I began my routine tasks of drawing up normal saline to use for ET tube suctioning and heparin to use for IV flushes, checking TPN and lipids to be hung on shift, reviewing new orders.  After report with the outgoing RN it appeared that it would be a routine night.  I was assigned to two stable vent patients.  One was a premie who was doing well, weaning off the ventilator and would probably be extubated in the next day or two.  The other was a full-term baby with a complex congenital syndrome who was not expected to have a good long-term prognosis, but was stable for the time being.

At 2:00 a.m. I was pleasantly humming along in my routine; ABG’s drawn, lines flushed, IV piggybacks hung.  When the phone rang, it started out as a simple call from my patient’s mother, the baby with the complex congenital syndrome.  Her voice was polite but tense as I gave her a status update on baby Sam. 

“Heidi,” she broke in, ” I really need to have Sam baptized by a Catholic priest.”

“OK,” I replied, ” Do you have a priest in mind, or would you like the Chaplain to stop by tomorrow to arrange something?” 

“I really need to have him baptized right now, tonight.”  This was a strange request to come in the middle of the night for a baby that was in perfectly stable condition, but something about the urgency in her voice made me pause.  I assured her that Sam was doing fine and did not appear to be in any acute distress.  Still, she was insistent.

“I know it sounds crazy,” she whispered, “but I just woke up from a sound sleep with the overwhelming feeling that if I don’t have Sam baptized right away, I will regret it for the rest of my life.”   I glanced up at Sam’s monitors.  Heart rate and blood pressure were stable, pulse oximeter looked good, latest ABG’s were within normal limits.  Still, something in her voice had taken my heart from its usual position behind my sternum and deposited it deep into the pit of my stomach.

“OK Ellie, it does sound a little crazy, but it also sounds like it’s very important to you, so why don’t you try to go back to sleep and I’ll see what I can do.”  Getting a Catholic Priest to perform a baptism at 2:30 a.m. in a Jewish hospital was going to be no small task.  I put in a request to Chaplain services.  Yes, the mother was insistent that it had to be a Catholic Priest.  No, the baby was not actively dying.  Yes, it had to be tonight.  I felt a momentary twinge of guilt, asking a priest to wake up and strap on the clerical collar in the middle of the night when it might not be warranted.  Still, there was something in that mother’s voice that I couldn’t ignore.

I plopped down on the chair next to Baby Sam’s warmer to do my charting.  His heart rate had dipped slightly, but not enough to trigger the alarms.  I walked to the supply closet to get fresh linens to put under the bed for the next shift.  When I returned, the heart rate dropped a bit more.  I made a quick check of the monitor and line connections and put my tiny neonatal stethoscope to Sam’s chest to listen.  The heart rate was definitely trending downward, although still not an urgent situation.  The pulse oximeter had also dropped by a few percentage points.  I asked the respiratory therapist making her rounds to stick around, and I placed a call to Dr. Raymond in the call room.

As expected, Dr. Raymond was not a ray of sunshine when I woke him up.  I informed him that Baby Sam was moving in the wrong direction and asked him to come to the unit because I didn’t have a good feeling about it.  He grumbled a bit and asked what the big #*! deal was.  He informed me that this was certainly no emergency and that I could just increase the oxygen and get over it already.  He was technically correct, of course.  Objective data outweighs a subjective feeling every time.  I took the phone order and made the necessary ventilator adjustments. I called several more times and repeated the process.  Within 20 minutes, Sam’s heart rate had fallen below 100 and his blood pressure was dropping.  The respiratory therapist had started manual bagging.  Another nurse called Dr. Raymond again in the call room.

“I don’t think he’s coming out,”  she said incredulously.  My first impulse was to run to the call room and kick the door down, but I couldn’t leave my patient.  I instructed her to use whatever force necessary to drag Dr. Raymond back into the unit.  She grabbed a large bag of normal saline, fully intending to use it as a firehose to get the man’s attention.

By the time Dr. Raymond arrived in the unit, the code had been in progress for at least 15 minutes, and he stood watching with a glazed, ‘deer in the headlights’ stare.  We had already called Ellie, the mother, to inform her of the situation.

“We’re already dressed and ready to go, I had a feeling,” she replied.  “We’re on our way. Please . . .”  The rest was unspoken, but I knew what the ‘please’ meant.  It meant please let my baby still be alive when I get there, please let the priest make it in time to baptize him.  The family had already come to terms with the fact that Sam would not be on earth long, his diagnosis had prepared them for that, but they thought they had weeks, possibly months before it happened.  I glanced furtively around the unit, trying to spot a man in a black clerical collar among the staff clad in blue scrubs.  Where was the priest?  I knew it would take at least 30 minutes for the family to get to the unit.  With my hands encircling Baby Sam’s tiny chest, I performed chest compressions with my thumb. Dr. Raymond mumbled out orders for epi and dopamine and code drugs, a formality as they were already drawn up at the bedside and ready to go.  I took a deep breath and prayed that Dr. Raymond would not call the code before the family arrived so they could have at least a moment to say goodbye.  I explained the family situation to Dr. Raymond and let him know that we needed a little more time, although I did not hold out much hope.  Dr. Raymond’s response was to ask why no one told him things were going south with Baby Sam, which drew a collective sigh and rolling of eyes from all who were gathered in the unit.

As if Dr. Raymond’s attitude was not vexing enough, the priest who arrived in the unit was even snarkier.

“Don’t you know how to do this yourself?” he nearly barked.

Why a Catholic priest would think that a Methodist nurse in a Jewish hospital could perform a proper Catholic baptism is beyond me, but my hands were too full at the time to respond.  He performed the baptism in record time and huffed out of the unit.

The family arrived moments later.  Mom Ellie, Dad and a 4-year-old redheaded big brother held Baby Sam for his last peaceful moments as we removed him from the ventilator.  While they waited in the family room, I removed all of Sam’s lines and tubes.  Dr. Raymond watched silently and shuffled off back to the call room.  I carried Sam back to the family and stayed with them, answering the 4-year-old’s typical questions about death.  I assured him that nothing that he did, said or thought about Baby Sam had caused this to happen.  Children that age often think they are somehow responsible, as if the normal jealous thoughts they have about a new baby can manifest into reality.  Ellie was calm and quiet.  When I told her that the priest had performed the baptism, she squeezed my hand and the first tear ran down her cheek. 

“Thank you so much for that,” she whispered.  Those are the moments that make all the rest of it worthwhile.

I headed towards the break room to get a cup of coffee and plan my attack of rage and fury that I would direct at Dr. Raymond.  How could a doctor be so uncaring, so cold and unfeeling?  If he thought he was going to catch a few more winks in the call room he had another thing coming.  I was plotting to make the rest of his time with us as unbearable as humanly possible.  As I opened the door, I heard the sound of someone crying.  I quickly checked my location, thinking perhaps I had re-entered the family room by mistake.  No, it was definitely the break room.  A large, disheveled man in blue scrubs sat alone in the corner, crying softly. It took a moment for me to realize that it was Dr. Raymond.  He looked up at me and dissolved into loud, gut-wrenching sobs.  I stood in stunned silence, unsure of how to react, mirroring the same ‘deer in the headlights’ stance that I had seen on him earlier in the evening.  Slowly, I moved to the coffee machine, poured two cups, and sat down beside him.  He took a sip and dissolved once again into sobs.  I sat beside him silently, not moving.  When he composed himself, he started to talk.  He told me about his residency, his experience with not being able to save a friend’s baby that led to his decision to go into neonatology, his overwhelming feelings of helplessness at still not being able to make the difference he thought he would.  I talked back, but not the angry tirade I had originally intended.  Something had changed, both for Dr. Raymond and for me.

Dr. Raymond and I never discussed that night again, but the following week when I arrived for my shift Dr. Raymond had not disappeared to the call room.  My newly admitted patient required lots of drips and I was having a very busy night, as was the rest of the staff.  My other patient, a post-cardiac surgery baby, was doing great and would be discharged soon, but he was a slow feeder and needed lots of encouragement with the bottle. As Dr. Raymond finished writing orders on the new admission, I grimaced and wondered aloud how I was going to get that feeding accomplished with my other patient.  I saw Dr. Raymond walk to the linen cabinet and don a yellow gown.  He sat down in the rocking chair beside the cardiac surgery baby’s bedside.  He looked up at me expectantly.  Wordlessly, I bundled the baby, placed him in Dr. Raymond’s arms and handed him the formula.  Dr. Raymond rocked, the baby ate, and all was well.  We would never again speak of that night, and I knew we would never have to.

Note:  Names is this story have been changed for confidentiality reasons.

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