Medicine Meets Faith

      I recently had the fortune of meeting an amazing family through my work with medically fragile and technology dependent babies and children. These children require gastrostomy tubes, ventilators or tracheostomy tubes to survive. When I met Sarah*, her 9-year-old baby girl Lucy* was not walking or talking and required a ventilator to breathe. She was in a vegetative state and unresponsive to painful stimuli. My job was to organize and provide nursing care for Lucy in her home. 

      Sarah is a single mom who put herself through LPN school while raising her beautiful girls. They are her entire world. Everything she does is to help them become loving and caring women that will hopefully become mothers themselves one day. 

      Lucy was diagnosed with terminal brain cancer at the age of 8 in November. The tumor was inoperable and chemotherapy or radiation would not have any effect on it. She was given steroids to decrease the swelling surrounding her brain so that she could live a little bit longer. The steroids made her very sick and caused her fragile body to become dependent on insulin for diabetes and her kidneys to fail. They even had to cut their Make a Wish trip to Disney World short due to the complications from the steroids.    

      This did not stop Lucy from going to school, playing with friends and attending church every week with her mom and 7 year-old sister, Layla*. Lucy only met her dad briefly as a baby and he was never involved in her life. They had some extended family members that they were close with, but they mostly relied on their church and God for help and support. One of the highlights for their family after Lucy was diagnosed was choreographing a healing dance that they performed at their church. They all truly believed in the power of this dance. The video was moving to watch and you could almost feel their passion and pain. 

      Unfortunately, the cancer continued to grow, causing terrible complications and Lucy was hospitalized at a world renowned pediatric hospital in July. She slipped into a coma in mid September. In late October, after many tests, treatments and evaluations, the medical team told the family that there was nothing more they could do for Lucy. She was brain dead and the only thing keeping her alive was the ventilator. The medical team wanted to  send her home immediately with hospice care. Sarah was not ready to give up her fight for her daughter's life and wanted her to remain on the ventilator. 

      Sarah is a very spiritual person and relies heavily on her love and faith in God. She wanted to give God a chance to perform a miracle and save Lucy's life. In my opinion, she needed more time to come to grips with the reality of the situation. And who is to say that God wasn't going to perform a miracle and save Lucy's life?

      Herein lies the problem......

      This world renowned pediatric hospital was on by-pass, meaning every single bed in the hospital was full and they had no room to admit any more sick and ailing children. Children that had a better statistical/medical chance of survival than Lucy. They needed her bed for these other sick children. If Lucy went home with hospice care, she could leave that day. If she went home on a ventilator, it would take 4-6 weeks to organize the nursing in her home to care for her. 

      The hospital kept putting more and more pressure on Sarah to take Lucy home with hospice care. Sarah felt very uncomfortable and was becoming increasingly more distressed. She also had Layla to take care of and all of the logistics that raising a healthy 8-year-old girl requires. 

      There are no winners in this story. I don't think the hospital is intentionally trying to be cruel to Lucy and her family. In fact, they have saved millions of children and continue to help them every day. This is an intersection between faith and science that is not easily reconciled. This is our health care reality. Everyone can objectively say that someone with a chance of living is entitled to that bed. But is it right for health care providers to force their beliefs on their patients and families? 

      This was heart wrenching for me to watch, even from the periphery. I tried to be objective and see both sides of the situation. As a mother, I completely understood Sarah's feelings and thoughts. Who wouldn't want to do everything possible to save their 9-year-old child? As a nurse, I completely understood the perspective of the medical team. They have dedicated their lives to helping children, and they have seen thousands of medical situations like Lucy's and unfortunately know that miracles only rarely happen. Would the precious resources that Lucy was using (the hospital bed, physicians and nurses) be better allocated toward a child with a better chance of recovery and survival? Where do we draw the line? Who makes the call? 

      I am not going to tell you how the story ends right now......I'd love to know your thoughts and feelings before I do. 

* All names have been changed for privacy.