Every breath taken was a struggle. Every. Breath. Now, at 5 months old, he was worse. The blood gas told me. My assessment told me. His arched back, the frantic look in his widened eyes, the way his entire body heaved when he took a breath – all signs of a body in distress. The muscles between his ribs (intercostals) were working overtime in an attempt to pull oxygen into the underdeveloped lungs. These little details, they all told the story of a struggle for survival.  It simply wasn’t enough. His nostrils flared, yet another sign of the body in desperate pursuit of oxygen.

His heart rate was 200; his temperature 101. Great, I thought, bitterly. Now he’s got an infection. Can’t catch a break at all! Infection is the arch nemesis of the NICU.  Even as I believe in God’s plan for us all, and that I cannot understand the reasons for suffering always, it’s times like these I, momentarily, get a bit testy with The Man.  Why does this child continue to suffer? I swallowed the knot in my throat and pressed on.

He was miserable, writhing and aggitated on the bed.  Somehow, he had the strength to take a few pulls on his pacifier, but his suck was weak.  He tried to cling to it, as if it was the thing that would save him.  If only he could keep it in his mouth!  He seemed so air-hungry.  Somebody had to do something!  He is suffering and I can’t bear to watch!  I felt anxiety crawling over me, threatening to consume me.

I picked him up, cradling him in my arm.  He settled into a position that seemed comfortable for the moment, throwing back his head.  I rocked and held him until the frantic look was replaced by grogginess and his breathing improved, minimally.  So this is what it’s like to suffocate, I thought, this is being trapped in a damaged body.  I wished his mom were here, to witness this suffering.  The thought was cruel and selfish.  I was  angry at her, allowing him to go on this way, not choosing to let him go.  But did she really have a choice?   Would I, as a mom, be able to “give him back to God”?   The anger that flared was quickly replaced by guilt.   Its difficult to watch him struggle, day after day.  I mustn’t  let my emotions distract me from the task at hand so I shoved them aside.  On the way home, in the dark quiet of my vehicle and away from the incessant beeping of monitors, I’ll deal with it.

Sometimes, life is ugly.  If we are shielded from the suffering of others, we are in danger of losing appreciation of the good in our lives.  Spend some time in the NICU- your priorities will quickly become clear.   Here in the NICU, life is a precious, sometimes a fleeting thing.

It’s not as much the loss of your patient that leaves your heart heavy and stunned- their suffering has ended, thankfully.  But, more so, it’s watching the hopes and expectations parents have for a child, pass away with the dying infant.  That is what is most heart-wrenching.  The letting go is so painful to witness.  I cannot imagine what pain it must be to bear.

Helping parents during a loss is part of  a NICU nurse’s role and it’s so important!  Often, nurses don’t know what to say to a parent who has just lost an infant.   The situation is tense, awkward.

Here are 7 tips to help parents (and nurses) during the loss of an infant:

1. Give them (and yourself) permission to cry.  Sometimes parents feel they must “be strong” and hold it together but the reality is that their loss is sad and overwhelming to them and it is perfectly acceptable for them to feel this way.  Acknowledge this.  Also, we as nurses and nurse practitioners, become attached to and come to know and love our patients.  No matter how many years or losses we experience in NICU, it’s tough.  It’s ok to grieve for your patient because it means you care.

2. Recognize their baby for the unique individual he or she was.  Call him or her by name and if the parents have not chosen a name, ask what they planned to name their baby and let them choose a name, if they wish.

3.  Inform parents of spiritual or pastoral services provided by the hospital.  Offer to contact their minister, priest, ect.  This brings such comfort to families.

4.  Give them time to be a family.  The greatest disappointment is  the permanent loss of the ability to be a family.  Make time for parents to have that “togetherness” by offering to let them hold their baby in a quiet, private place.  Our NICU has a “grieving room” or “quiet room” where several members of a family can gather, sit, and hold their baby.  It’s away from the constant alarms, monitors, bright lights, and busyness of the NICU.

5.  Give parents the opportunity to “do.”  In our NICU, when an infant passes away, we bathe and dress the baby, take pictures as keepsakes, make foot and handprints, and save hair as momentos for the family.  Sometimes parents will want to bathe, dress or apply lotion to their infant.  Let them!   Ive even had an entire family who wanted to help bathe and dress the baby- mom, dad, grandparents.

6.  Phrases such as “Im sorry for your loss” or “I can see that you really loved your baby” are appropriate and comforting.  Avoid saying things like “You can always have another baby” or “Try not to think about it.”  These are unrealistic and do not address the emotions at hand.

7. Help them connect to other families. There are so many bereaved parent organizations that do exactly this: help people connect.

NICU nursing, while rewarding, is emotionally taxing, at times.  It’s never easy to lose a patient, even if the ending of that patient’s suffering is a blessing.  We not only care for our patients, but their families also.

This post was inspired by many of my patients, but especially one in particular, who enabled me to see a purpose in his life and reminded me that I am blessed beyond measure, and most importantly, not to squander any opportunity to show love and compassion to others.