How Springtime and an Extra Chromosome Changed Me

For as long as I can remember, spring has been my favorite season. So much excitement fills the air when we survive another Minnesota winter; children and teachers alike can see there is an end to the school year, families begin planning summer vacations, Easter baskets and egg hunts are bountiful, and increasing sunlight means the days become longer and brighter.

Springtime equates to new life and new hope.

It was five years ago this spring that one such life changed the trajectory of my motherhood, bringing about hope in unexpected ways. My second child – a son named JohnPaul – was born with Trisomy 18. An extra copy of the 18th chromosome meant JohnPaul had cysts on his brain, an intestinal omphalocele that included his liver, a ventricular septal defect in his heart, underdeveloped lungs, and spina bifida. The extra chromosome that was present in each cell of his body at conception wreaked havoc on every major organ system he needed for survival.

I carried JohnPaul to term, electing a cesarean delivery for his birth. My husband and I prayerfully discerned that deploying a perinatal hospice approach was how we wanted to uphold JohnPaul’s dignity when his body would pass from life to death. We felt strongly that JohnPaul’s remaining moments on earth should be a compassionate and loving time, pain-free, and characterized by limited intervention.
JohnPaul Robert was born at 12:18 p.m. on April 12, 2013. He weighed 4 pounds, 15 ounces and was 16 inches long. He lived one hour outside my womb. JohnPaul died in my arms shortly after he was baptized and I had been wheeled into a surgical recovery room.

One might ask how a deceased baby (and a bereaved mother) renders any hope. Hope is an all-encompassing feeling, marked by an innate sense that what is wanted can be had. Hope was in abundance when the journey of having waited faithfully for JohnPaul’s arrival came to fruition at the moment of his safe delivery! Hope radiated brightly when, after a quick assessment by doctors and NICU staffers, my son was wrapped in a blanket for me to hold and nuzzle just in time to hear him make a few soft breath sounds! Hope arose out of despair when I could say with confidence that JohnPaul experienced only love and compassion in his short and dignified life, never having known the pain or hatred this world can sometimes offer.

Perinatal hospice is defined as a way of caring for mother, baby and family, not a place that has a finish line. For us, perinatal hospice became an opportunity for wholehearted and intentional living. When we decided we did not want to prolong JohnPaul’s life through invasive measures after he was born, every choice we made in the months leading up to his birth were through a lens of purpose-filled and authentic living.

And it has made all the difference in the time that has passed since JohnPaul’s death. Now, each year when the snow begins to melt and the sun begins to set later and later in the evening sky, I feel a little twinge of anticipatory excitement because my family will prepare to wear purple clothing for celebrating Trisomy 18 Awareness Day on March 18 and we will bake and eat a cake for JohnPaul in April.

The springtime never fails to remind me of the winter I learned of the extra chromosome, and the season I learned to embrace the hope that transcended from it.

// Janelle C. Gergen resides in Northern Minnesota. She is a wife of 13 years and a mother of 4 children. She has a BFA in Graphic Design and an MS in Communication; works full time outside the home as a Comm Manager; is an avid coffee drinker, news junkie, and treadmill walker. //

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