Sitting in the newborn intensive care unit five years ago, I could feel my heart pound in my chest and my throat tighten in panic at the sight of my son. The doctor had come to my bedside that morning and told me that Phoenix had suffered through a difficult night. But that didn’t remotely prepare me for what I now witnessed. Alarms were ringing, the numbers on his monitors plummeting. All the while, my beautiful boy lay there, apparently peaceful, as chaos surrounded him. What frightened me most was that nobody rushed to his side. This state of frenzy, it seemed, was the status quo for our boy, and it was only my husband, Adam, and I who were distraught.
Phoenix was just three days old. I had developed preeclampsia during my pregnancy and spent the last several weeks in the hospital, desperately trying to keep him inside and growing. Finally, at 27 weeks, my body decided that it could do no more. The doctors rushed me to the operating room, my frightened husband at my side, and delivered our tiny baby by Cesarean section. He was one pound, 12 ounces and just 12 inches long. Although he was very early and very small, I believed in him. I knew that he would thrive.
Now Adam and I sat at his bedside. After what felt like forever but was only a few minutes, the nurse approached us. She discussed some of Phoenix’s challenges and went to get his doctor. We waited, choking back fear and praying for a miracle.
When the doctor came in, she was calm and gentle. I cannot remember her name or her face. But what I remember is this: She began to describe to us the difficulties that Phoenix had faced in the last eight hours, the hours during which I had slept peacefully, aided by pain medicine and a false sense of security. He had suffered an intra-ventricular hemorrhage, or IVH, which is bleeding in the ventricles of the brain. There are four types, or grades, of severity, the doctor said, and she began to explain the complications related to each type.
I remember, too, how time warped as she talked on and on about the types. It was like a trick they do in movies, clock hands racing while someone drones in slow motion. Each time she described a grade, I expected her to stop and tell us that this was the type of IVH that Phoenix had had. But she kept going. At last, she mentioned a grade 4 hemorrhage, and she swallowed hard around the words. Fleetingly, my heart ached for this doctor who had to deliver such news to us, who had to tell us about the permanent damage that this hemorrhage was causing our son.
When she was finally, mercifully finished telling us what Phoenix was up against, we just sat there in shock. She gently explained that we could take time to make some decisions about how we would like to proceed with treatment and left us with our son. In the quiet of the newborn intensive care unit, I could feel the sobs building inside me. “Hurry,” I begged my husband as he wheeled me back to my room.
Once there, we both collapsed, allowing ourselves to release the grief behind this closed door. It didn’t seem possible that this baby could fail, not this little boy who had spent the last many weeks dancing joyfully on my bladder. Not the feisty guy who had such bursts of energy inside my belly each day. Not our son, whom we had named years in advance, after the power of being renewed by fire. And, yet, here we were.
As I was lying in my hospital bed in the weeks before Phoenix was born, I had often talked to him. I told him my fears about his health. I told him about my love for him. I cried many, many tears. One of my biggest fears, I told him, was that he would be born and spend hours being poked with needles and feeling nothing but anguish. While he still kicked inside me, I told him that if he needed to let go, if he wasn’t strong enough for this life, I could handle it. Especially if it meant that he could avoid being in pain. It wasn’t going to be that way.
Adam and I had never really discussed the worst possibilities for our son, but we had decided a while back that whatever happened, we would be the ones to decide how Phoenix’s care proceeded. Now was the time to face that decision.
While Phoenix still kicked inside me, I told him that if he needed to let go, if he wasn’t strong enough for this life, I could handle it. Especially if it meant that he could avoid being in pain.
What we both knew was that we loved this little boy more than anything we had ever known before. We discussed the diagnosis we had been given and what that would mean for his, and our, future. And I knew this: My greatest fear for Phoenix was right before me, coming true inside these walls where life-and-death choices were made every day.