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It was the spring of 1996. I had recently fulfilled my one-year requirement of adult-cardiac nursing and had just started cardiovascular pediatric training. That was all I had wanted to do when I started working at St. Francis in 1995—take care of cardiac kids. Finally, my journey into cardiovascular pediatric nursing had taken its first step.

But journeys don’t always unfold as you had planned them during the calm, midnight hours of sleeplessness.

It was about a week before Easter and I was alone in room 4116 with one of the most beautiful babies I had ever seen. Hannah appeared to be the perfect newborn. Her dark skin was flawless. Her black hair was thick. Her rolls of baby fat had been precisely placed—cheeks, chins, arms and legs all overflowing in the right places. She was perfect—on the outside.

Hannah had been born with persistent pulmonary hypertension and a coarctation in her aorta. Not too long after her birth, she was in respiratory distress and had to be ventilated. Her new home was now the Neonatal ICU.

The only cure for pulmonary hypertension is time. But time wasn’t resolving Hannah’s life-threatening problem. Her doctors tried to buy her more time; it was decided that the coarctation would be repaired. After the surgery, she was admitted to the PICU in room 4116, where I first met her and her family.

Hannah spent two days in the PICU with a fledgling nurse who couldn’t reconcile the outward, perfect baby with the inward, sick baby. How could this happen? How could God place life and death in this mother’s hands, all in the same moment? And why did He have to contrast life and death so distinctly here in this room—by placing her beauty right next to her defect?

I cried for two nights. It wasn’t like this taking care of adults. You expect things to happen to them, they’ve lived their lives, their bodies are dying anyway? Right? How could I have been a nurse for two years now and not have faced any of these questions before?

And yet, here I was, just days away from Easter—a holiday that celebrates renewed life—watching Hannah’s family lessen their grip on their baby’s life one finger at a time. What was I doing here?

On her second day in the PICU, Hannah’s condition worsened. She was placed on ECMO (extracorporeal membrane oxygenation) and moved back to the NICU. Her pulmonary hypertension refused to bend; she died when she was five weeks old.

Her mother and father got to hold her at some point. But for the five weeks of her life, she was untouchable—too sick to hold or rock. Regardless, they held to the story, that there must be a purpose here somewhere. Her mother knew that there was a reason she had carried Hannah for nine months and gave birth to her. There was a reason that her life lingered for five weeks. And, although she may never know what that reason is, she knew that there was one—there was a reason out there, somewhere.

I never found the answers to my questions, but taking care of Hannah, even for those few days, helped me to see the improbability of some journeys—life obliging death and death regretfully accepting. Hannah lived her life graciously and with dignity. Her parents lived her brief life with her as they were expected to—with support, love and respect. They never scowled or were inconsiderate of those around them—they knew there was a purpose for their daughter’s journey.

I think they already knew that it really doesn’t matter if you take the short road, over the mountain and face the steep climb; or take the west side of the mountain which is not too long but has rough terrain; or the east side of the mountain, which is the longest but easiest way. Whichever way you go, what matters is what you’ve brought back with you.

I guess that’s why I stayed, even with no answers to my questions. I figured if Hannah could tough out that steep climb over the top of the mountain, then I could get through the tough terrain around the west side.

Perhaps the reason her parents will never know is right in front of me —babies like Hannah need a place to go over the top of the mountain, and pediatric nursing provides that place. That’s why I stayed.


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