AS A NEONATAL ICU (NICU) nurse, I often wonder why some babies live only a short time in their mother's warm embrace—why some get a lifetime and others only minutes. In the last 17 years, I have seen babies born so prematurely they never had the opportunity to take a first breath of life. Babies I expected to live have suddenly died—and some I thought would die survived and thrived. One such baby boy profoundly impacted my perspective on supporting families through end-of-life decisions.
Meet “Caleb,” a healthy, full-term baby boy. His birth was difficult, requiring vacuum-assisted operative delivery, but Caleb recovered quickly. He spent his first hours enjoying his family, but he soon experienced his first seizure.
Caleb was admitted to the NICU and continued to experience frequent seizure activity. Despite endotracheal intubation, mechanical ventilation, therapeutic hypothermia for neuroprotection, and anticonvulsant therapy, Caleb's clinical status deteriorated rapidly. His medical team searched for a potentially treatable etiology for his seizure activity. Caleb's family stayed by his side, holding his tiny hand.
After therapeutic hypothermia was discontinued, Caleb remained comatose. The physician said Caleb may never be able to sit up, roll over, walk, talk, or eat normally, which devastated his family. The family requested that he be baptized, according to their Catholic faith.
Later that same day, Caleb's mom gently dressed him in a white satin baptismal suit. I cannot imagine how she must have felt buying an outfit for her baby boy who may not survive.
“What do you desire for your child?” the priest asked.
Caleb's mom was supposed to answer, “I desire for him to be baptized.”
Instead, she said, “I want God to heal him.”
She was slightly embarrassed when her family told her the “correct” answer.
Caleb remained comatose as the baptismal water beaded on his brow. The priest anointed Caleb with holy oil and prayed for healing. Caleb's mother needed the weekend with him; she could not yet bear to discontinue life support. I listened to her and tried my best to support her decision.
I helped Caleb's mom give him a bath. She carefully washed each precious chubby roll. I was confused. How should I guide this family? I did not want to give them false hope. The best I could do was simply to continue to help make every moment this family had with their child to be as meaningful as possible.
The medical team met with Caleb's family to discuss their options. Caleb's mom decided it was time to end Caleb's suffering. She could not bear to see his life maintained with machines any longer. I wept with Caleb's mom, hugged her, and knew I could not begin to comprehend her pain.
The next morning, I expected to find an empty crib space. I dreaded walking by that empty spot. I needed time to reflect before I could move on.
When I checked my assignment, however, I was amazed to see Caleb's name. He was in a family room with his mother. He survived the night without life support. Caleb was moved back into the NICU for further evaluation and management. He continued to improve. Later in the week, Caleb went home with his family. He is now 7 years old and has achieved every developmental milestone.
Parents of critically ill infants often must make heart-wrenching decisions with no clear right or wrong answer. As nurses, we cannot make these decisions for them, but we have a very real opportunity to give comfort, peace, and spiritual support to families in need of help in the most stressful experiences of their lives.