For privacy reasons, I’m not going to tell much detail about specific patients, but I will for one. Pirouette. It was hard not to notice this baby. She had a condition called hydrocephalus where too much fluid is produced in your brain and it causes your head to swell. A common treatment is to put a drainage system into your brain (called a shunt), which takes the excess fluid and moves it down into your abdomen where your body can more easily process it. Well, Pirouette had a shunt but for many reasons (including other medical complications), it did not work and the excess fluid in her little head was stuck there. The size of her head was astonishing. It was easily three times what it should have been. She had so much fluid that her skull bones were not touching (babies are born with un-fused head bones to allow for squeezing down the birth canal, this is normal and the bones fuse during the first year I believe), making moving or holding her unsafe.
Children have an amazing way of accommodating many illnesses and adversaries, but eventually, Pirouette’s body was unable to fight the many pressures against it. CSF began to leak from a small wound and it became clear that she would not last much longer. I made sure to spend some time with this little princess. I massaged her legs and did some passive range-of-motion to loosen up her very contracted muscles. She didn’t like being moved with changes and her sweet face would scrunch up and break your heart. However, when you rubbed her feet or talked sweetly to her, her face would soften and you could tell she felt loved. We all did our best to make sure she felt it. Eventually Pirouette took her last breath. Neither Vivienne (she was caring for Pirouette that night and I was charge) nor I had ever done post-mortem care so Pam came to help us (immediately after doing the same for another patient of hers, I can’t begin to describe her strength). We gently cleaned her body, straightened out her new dress and placed her in the bag. We notified Cici (the logistic person on for the night) and her husband (the Chief Medical Officer that week) and the four of us escorted Vivienne (who carried Pirouette) to the morgue. As we zipped the tent back up I felt such an emptiness because that was it. We went back to work and moved on. What was missing was notifying someone. There was no one to notify. You see, Pirouette was abandoned. I can only imagine how difficult it would be to care for a normal, healthy child in such devastated conditions, but a medically fragile child? No way. Her parents probably left her in the best place they knew to and hoped for the best. Still, knowing that we were the only people to know that this little girl had gone to heaven was heavy on my heart. I asked that Jesus would hold her tightly and give her the love every child deserves.