Love and Loss: One Family's Preemie Journey

Thursday, 3/3/2016

Jennifer’s story is one of both triumph and heartbreak. After giving birth at 28 weeks, she watched as her preemie twin boys Micah and Zachary fought to live. While Zachary is now a healthy 4 year old, Micah passed at 11 months after a battle with necrotizing enterocolitis, a severe intestinal infection. Below is an excerpt of one of Jennifer’s articles on HuffPost Parents. We are so thankful to have Jennifer as a donor mom, giving in memory of Micah and in honor of Zachary and Elijah, the family’s newest addition. 

My twin boys, Micah and Zachary, were born just shy of 28 weeks gestation, each weighing about 1200 grams. They were delivered via emergency c-section and whisked away to fight for their lives. And fight they did.

I was terrified, overwhelmed and physically and emotionally exhausted. But rather quickly, I realized that I had it easy. I was not the one fighting for my life. Not the one struggling to breathe. Not the one having tubes shoved down my throat. While I gave everything to become a NICU mommy, Micah and Zachary gave everything to live.

Their organs were underdeveloped. Their skin was thin and flimsy, because unlike full-term babies, they did not have any reserve or fat stored up in their bodies. Without modern medicine, Micah and Zachary would not have lived more than a day. 

One in nine babies is born prematurely in the United States, placing them at higher risk for infections, developmental disabilities and chronic health complications. Preemies are uniquely vulnerable to many of the 10 leading causes of infant mortality, listed by the C.D.C. Tragically, Micah lost his fight to #10 on the C.D.C.’s list — necrotizing enterocolitis, a severe intestinal infection. Yet, Zachary surpassed all expectations and is now a healthy, vibrant toddler. My life is every NICU parent’s worst nightmare and aspirational dream.

This paradoxical world, of having one twin die and another twin thrive, demonstrates the profound strength of preemies. Micah fought like hell for 11 months at home and in the hospital before he lost his battle. Despite his daily struggles, Micah smiled. Micah found happiness in his brother’s cuddles, his daddy’s voice and his mama’s kisses. Zachary has conquered his rough start to life. There is not a hint of fragility in Zachary today.

It is terrifying, overwhelming and exhausting to be a NICU parent, but what is it like to be a preemie? What is it like to be alone in a plastic box for hours, days, weeks or even months, when developmentally, you’re still supposed to be engulfed in your mother’s warmth? What is it like to be forced to breathe, eat and live when your body is not physically ready to do these things?

Preemies persevere and overcome challenges that adults could not. Although preemies are some of the toughest, most resilient people on the planet, the suffering they endure is profound. In an ideal world, we would prevent preterm birth. Until we reach this ultimate goal, Level IV Neonatal Intensive Care Units (NICUs) are preemies lifeline. Miracles happen in Level IV NICUs, where the strength of preemies is complemented by advanced technologies and specialized clinicians. Babies that would otherwise never survive get to go home and thrive. 

To read Jennifer’s full article, click here. To read more of Jennifer’s articles for HuffPost Parents, click here.