I had just arrived in the NICU, ready to spend the day with my children. After losing our first triplet shortly after birth, our remaining two survivors were nestled into their isolettes, now three weeks old. As I sat down, a nurse quickly approached me.
“Your son needs emergency surgery. The doctors need to meet with you ASAP.”
It all happened so fast. My heart started racing as my mind became clouded with fear. My son, Parker, had faced the tougher road since birth, but through his collapsed lungs and a slew of other issues, he kept beating the odds. As doctors explained to me, my sweet boy had developed necrotizing enterocolits, also known as NEC. It’s a devastating disease that is most common in preemies, impacting their intestines. In my son’s case, NEC was a beast, causing holes in his intestines. Without surgery, he wouldn’t survive. With surgery, we still didn’t know if he would make it.
My husband quickly rushed to the hospital as I signed the paperwork agreeing to surgery. We were ushered out of the NICU, not allowed to be at our son’s bedside during this risky procedure. For the next hour, we sat in the waiting room, our eyes wandering off in the distance, no words spoken between us. As we held hands and quietly cried, time felt as if it was at a standstill. My mind wandered back to the past three weeks; the traumatic birth of our triplets at 22 weeks gestation, the heartbreaking loss of our daughter, and the daily roller coaster of emotions as we watched our one-pound babies fight for their lives in the NICU. Now, we sat there wondering if we would ever see our son alive again.
A nurse eventually approached to let us know they were done. We were taken back to our children’s room, a team of doctors and nurses surrounding our son. Our little Parker made it out alive, but we were far from out of the woods. Doctors removed his dying intestines and performed an ostomy, a remarkable task given our son was so small. As we watched the machine help our son breathe, doctors explained the next steps. An ostomy bag covered his belly and would remain there for months. Once he gained enough strength and healed, doctors would perform another surgery to reattach his intestines.
As the days turned into weeks, we watched our son make tiny strides. Nurses eventually tried giving him a milliliter of my milk, and after two weeks, we were even able to hold him again. But as we quickly learned, it’s one step forward, then two steps back.
Just as we were beginning to think our son would survive, we were dealt with news no parent ever wants to hear. A routine brain scan showed that our son had suffered a massive brain injury. Doctors believe it was caused from the stress of surgery on such tiny body. Just two weeks after almost losing him, our lives were once again shattered.
On August 16, 2013, our son died in our arms. He faced grim odds since day one, less than a ten percent chance of survival being born more than 17 weeks premature. Yet he kept on fighting, proving that strength comes in all sizes. NEC is a terrible disease, one that can come on both fast and furious. According to the C.D.C, it’s the leading cause of infant mortality.
While I could be angry and frustrated and ask “why me”, I choose to look at the bright side. My son wasn’t supposed to survive the first night, yet he lived for 55 days. And thanks to our medical team that caught NEC so quickly, they were able to give us an additional five weeks with our son. Those extra days provided our family with so many memories, special moments that will last a lifetime.
May 17th is NEC Awareness Day. For more information on the disease, click here.