James's Story

This is the story of James written by his mother, Mary Ellen Mannix. I had the pleasure of meeting Mary Ellen at our Philadelphia meet and greet.



"Show me a hero, I'll write you a tragedy." ~ F. Scott Fitzgerald



Ever since James died, I hated to hear about "miracles". While it is wonderful and heartwarming to hear of kids beating odds, James did not fit the traditional definition. Every baby is a miracle. James's story, his course of care and treatment is not what the heart community - or any, really -would refer to as miraculous. Miracles are not always what we want them to be. Sometimes, they take time to reveal themselves.



James had a day and half before his medical team, which included the renowned baby heart surgeon, William Norwood, decided to perform open heart surgery on him for a discrete coarctation of the aorta. In that day and a half James ate. He slept. He was awake. He opened his eyes alot. He would root for more food after he just ate. I swear he was trying to coo at a day of age too. He snuggled into my arms so deep and comfortably the one time I held him alive; we were like two perfect puzzle pieces. It was short lived because his dad and I were not included as a member of his care team.



We were not told they would perform open heart surgery on him. We were not allowed to be with him in recovery even though we would not leave the hospital. We were not told the treatment options that were standard available for treatment of his condition at the time. The little that we did ask, was denied.



James was prenatally diagnosed, was fully insured, had access to top level care. In reality, James was put on a recognized broken ventilator, his parents were not given full information as to the team's medical care intentions, was prematurely extubated, failed by his care team to rescue, suffered insult to his brain stem and cortex, endured ventilator induced pneumothorax, and his care team had poor hand off communications. These are just a few of the preventable errors that led to his death.



It has been nine years. Since his birth and in death he was neglected, lied about, and ignored. James's story is full of tragedy. There are alot of things people would rather not hear. The value of experience is to study it, share it, explore the what, why, and how of the happenings. The answers took well over five years to get/find/learn.. James's story is in book form that is now available for free to medical, nursing, and law students. It includes Dr. Norwood's thoughts too. While it is not an easy read, it offers helpful insights for children born after James. It is also extremely important for both patients and clinicians to gain a fuller understanding of how important communication is. It is more important than the number of surgeries performed or even clinical skill.



James's life is a message to all patients, heart parents, and clinicians - parents are a part of the care team. Pediatric patients are at all times the parent's child (ren). Never some doctor's or hospital's. James's miracle is that I still communicate with one of his doctors. His one time pediatric cardiologist and I suffered through litigation. James's innocence helped me remain hopeful in what I always believed. Physicians invest years of their lives to learn how to be the best at helping people - not hurting them. Parents and patients could help by remembering they are human too.



James will always be my little miracle. He was fat and round and cute as a button. We love him dearly.

He is everyone's hero.
 
 
http://jamessproject.blogspot.com/