I first met her at the bedside of her newly born son Tyler. Barely hours after her caesarian section, this mother mustered enough strength to get on a wheelchair to visit her little human at the NICU.
That was just the beginning of our journey together. She didn’t ask me how long or treacherous of a journey it was going to be. Secretly, I was relieved that she chose instead to focus on Tyler because if she asked me, I didn’t know the answer.
Tyler was sick. In medical terms, he was “critically ill.” I know because that’s the ICD-10 code I billed for his care every day until the day he was discharged.
He entered this universe with the neo-response team resuscitating with the placement of a breathing tube to survive, a catheter into his umbilical vein for nutrition, and one into his artery for monitoring the adequacy of air exchange and monitoring the electrolytes and other metabolic byproducts the human body makes constantly.
Tyler was born with a heart that wasn’t capable of supporting life. He had an extreme form of heart malformation that limited blood flow to the lungs.
This meant that he could not oxygenate the blood, so his brain and other organs of the body could function well. This also meant that he was attached to many lines and tubes supporting his very existence. These, in addition to his tenuous clinical course, prevented his mobility so much that Janae didn’t get to hold him for the first seven days of his life.
All that Tyler experienced was the not-so-gentle touch of multiple examinations from all the consultants, the rough sheets, needle sticks, and all of the stimulus of a very busy NICU that is filled with various loud sounds such as ventilators, alarms, and the conversations of multiple caretakers around him.
Janae was very happy and held on to every word with much enthusiasm when we gave her one positive piece of information, which was so rare in the first two weeks of our acquaintance.
The negative news didn’t really elicit the magnitude of reaction that I anticipated, which made me wonder if she really processed and comprehended what she’d just heard.
Maybe, just maybe, that was the secret of her resiliency? To hold on to positivity with such optimism so much closer to your heart that you didn’t let the negativity of the setbacks sap the energy that kept you going forward and hoping to see that light at the end of the tunnel?
Janae came every single day for rounds and went back to her doctor’s appointments. She continued to pump and store her breast milk even though we never could feed Tyler for a very long time.
Even immediately after postpartum to the very last day that she roomed with Tyler in anticipation of discharge, she never showed any signs of fatigue or sadness. But I wondered about her threshold of physical and psychological capabilities and was afraid she was pushing herself to the limits.
It’s impossible to carry the burden of all that information, medical jargon during rounds, and uncertainty of the interventions to see your little one getting poked and prodded by well-meaning caretakers and not feel overwhelmed.
Above all, there was that uncertainty if he would even survive with his multiple trips to cardiac catheterization, liver biopsy, and the bone marrow biopsy because he also had a very rare combination of heart disease with congenital bone marrow suppression and liver failure with iron overload.
Should I call that resiliency? Should I call it resistance?
I am not so sure this extraordinary behavior exhibited by Janae even has a name.
She certainly seemed resistant to her fatigue, her postpartum pain, and her sleep deprivation. Was it resilience that gave her that endurance, strength to plow through human beings’ ordinary demands and be there for her sick child?
I wish I knew the answer. I wish I knew how she managed to keep her composure in many of our family meetings and post-code debrief sessions while I was choking on my own tears.
I asked her one too many times how she is coping and what her support resources are. She said in a matter-of-fact tone, “I exercise — a lot “with emphasis on ‘a lot.'”
For me, that was a cultural shift. In my ethnic background, the peripartum period is a period of rest and rejuvenation. The daughter returns to mom’s house so she can recuperate from the stress of birthing a baby.
It’s a time of passive recovery where the postpartum mother is on a strict “bedrest” with matriarchs of the family fussing over them and feeding them nutrient-rich food, and protecting them from elements.
Now, Janae was stretching her limits and seemed to be functioning beyond expectations. She actively sought endurance by reaching to her inner strength like a Navy Seal, beyond succumbing to what life presented to her. She persevered, she persisted, and she faced all adversity with the true grit of a possessed warrior. I would call that resilience.
I have met many mothers like Janae in my time as a neonatologist. I continue to wonder what makes mothers so strong? Strong to hold on and strong enough to let go? I’m still waiting.
Sharada Hiranya Gowda is a neonatologist.
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