Perhaps one of the most difficult cases of my medical career that I have ever encountered was that of a late teenage boy who I will call Jacob. He presented to me one night when I was on call in the emergency room. Jacob had been born with severe mental retardation and craniofacial deformities, and he never physically and or mentally progressed beyond the stage of toddlerhood. The first time I stepped into the room to examine him, I had to hold back my tears. What I saw in front of me was not a boy. He looked almost alien to me. His head was severely enlarged and deformed, and he probably weighed no more than fifty pounds. He had undergone craniofacial surgeries as an infant. I was shocked to find that he had no feeding tube. His parents had fed him all these years. Despite his appearance, his parents informed me that he had never really had a major hospitalization since his earlier years as an infant.
This time, however, Jacob was critically ill. He had presented with high fevers and respiratory distress, and he had pneumonia with septic shock. All of his vital signs and laboratory data told me that he had little chances of survival. His parents made the decision that they would not place him on a ventilator with a breathing tube, however they wanted other measures such as fluids and antibiotics administered to try to save his life.
Initially I really struggled with his parents' decision. What I saw in front of me was a dying boy who appeared to be suffering in a tiny body that seemed to be more of a prison. I wondered what his parents' intentions were. Could they not see what I saw? What type of life were they trying to preserve?
I took care of Jacob for several days in the hospital and really came to know his parents well. They were incredible individuals. I learned that Jacob had been adopted from birth. His parents had also adopted several other children with various physical and mental problems throughout the years. They had a strong Christian faith, and their mission in life had been to serve abandoned and orphaned children with various medical problems. As my own daughter is also adopted, I felt an instant bond to this particular couple. However, what astounded me is that these children that they adopted were not what I considered normal. My daughter had a healthy and normal childhood development. The children that this couple cared for all had major medical issues. Many of them had already passed away during their early toddler years.
I saw on a daily basis the deep love and bond that this couple had for Jacob. I am quite sure that it is this bond of love that sustained this fragile boy for all these years. There are no studies that I know that can prove this fact, but for Jacob to have had such a severe presentation and still be living was, in fact, a miracle. Day after day I was astounded that despite his severe pneumonia, shock and kidney failure, he continued to breathe on his own and his little fragile heart continued to beat.
I realized that his parents were struggling to let him go. One of his parents was by his side day and night. I believe that Jacob continued to hear them and feel their presence, and that is why he was still here on this earth. Jacob did not want to leave his parents.
This case continued to haunt me. I questioned whether I had made the right decision. Should I have encouraged them to give more aggressive care from the beginning? They had made it clear that they did not want him on a ventilator or with intensive care measures, but his parents were not ready to accept pure comfort care. I believe that they were still looking for a miracle.
One night I began to pray about this case. As I prayed, a vision came over me. I saw a boy in a field of gold, and he was kicking a red soccer ball. As he turned around I saw his face. It was Jacob, however, his face had been transformed. It was the face of a perfect angelic little boy. He smiled at me, and then ran through the field of gold and disappeared.
After I had this vision, I struggled whether I should tell Jacob's parents of it. Deep inside I knew that I needed to inform them. When I walked into the room that day, his parents and grandparents were by his side. They had been praying over him. They were still struggling with letting him go. I told them of the vision, and that I felt it was time to let Jacob go. His mother burst into tears but she knew at that instant that this was the sign that she was praying for. His family said their goodbyes to Jacob. Jacob was enrolled on hospice, and shortly after he passed away.
I still think of Jacob. When I see him now, I do not see him as that alien of a being. I see a perfect little boy running with a red soccer ball through a field of gold. I realize now that this is the way that his parents always saw him. Their unconditional love never visualized a boy with deformities or disabilities. They saw their son.
May he rest in Peace in his Field of Dreams
M. McMahon MD
