A Mom's Journey
By Ilene Corina

It’s been a long time but still I awaken during the night and wonder how such bad things happen. Often, not angry at the incident itself but more often, that not enough is being done to stop these things from happening to others.

It was a normal day, in a normal family, in a normal part of the world. No wars, no plane crashes and no media hype about hurricanes, tornados or famine, when my only son went in for a “simple” procedure. A tonsillectomy that so many children have. I chose the nicest doctor of all those I met with. The one that I felt bonded with. The one I felt I could tell honestly “take care of my baby because he is my whole world”. The doctor, who was kind and never made me feel rushed. So, when I went back to the many doctors the following week to let them know that my child was still bleeding long after surgery, I was surprised that no one called the surgeon. Feeling “safe” when he finally saw my baby after a full week, I knew everything was going to be okay because “my” doctor told me so.

Never, was I to expect that Michael would die the next day, at home, in my arms from the tonsillectomy, also known as that “simple” procedure.

Not a very religious person, I couldn’t believe that there could possibly be a God that would cause this much pain. That my heart would be torn right out and I was supposed to have a reason to fight to survive the pain I felt. Why should I fight it, there was nothing left in life for me here.

Leaving immediately for Florida to be with my grandparents, I flew for the first time, first class. I couldn’t bare the thought that someone else’s child may cry or be near me or even worse, a parent may scold them for voicing his or her anger for being cramped in an airplane. No one could possibly know my pain and how I wanted to yell to the world how precious life is. I had to hurry and visit with my elderly grandparents whom I adored so much and couldn’t make the trip for the funeral. I had to make sure they knew to send me a sign if they were to see my son before me. I asked them to send me a butterfly, so I knew there was hope.

It was no surprise to me, or my husband who witnessed this conversation, that months later, at my grandfathers funeral, a beautiful Monarch butterfly hovered around my head for many minutes for everyone to see. I was to finally rest assured that my son was in a better place and I can go on.

Still in disbelief, I found a lawyer to help me search for answers about why Michael on that warm spring day, from a procedure that so many people get routinely, died. What did I do wrong? Did I do everything possible? Was I a good mother? Or did I fail my family, most importantly the child whose life was entrusted to me?

I did not need the money, there were no more birthdays, no need for a college fund and Christmas was to be spent in seclusion for years to follow. I needed answers and there was pain that the doctor, whom I trusted to care for the most precious thing in my life, now failed to return calls and tell me how this could happen. Now I began to want him punished, not for what he may have done, but for leaving me to sort this out and become an emotional mess that I had become. I actually liked this doctor and believe in my heart, to this day, that he too suffered. But I would never know because he stopped talking to me the day the autopsy report concluded that my son died from a tonsillectomy.

Unlike a fear of roller coasters or a fear of flying, the fear of doctors or hospitals can, in fact be dangerous. Hospitals, cold and scary places already, to a family who has gone through a death or injury from a medical error, now often look like a possible death sentence. Not just because of our experience, but because we are being put on that roller coaster without a seatbelt.

Years of anger that no media would listen, that I had no contact with the doctor and did not know his feelings, nor was anything being done to stop this from happening to others, I realized that I was as vulnerable as the next person and it can happen again and again. My child, not quite 3 years old, died from something that only the people in those white coats know can kill. I needed the public to know too.

But not long after Michael’s death, we began trying to have children again. Forced into the world of healthcare and in need of fertility specialists, I needed to trust the healthcare system again. Soon, we had a healthy child that brought constant tears of happiness to my extended family every time they saw him. He became the chance for others to now forget, that I still suffered alone at night in fear that at a moments notice he too can be taken away. Fears and thoughts that are forced upon me forever.

Another pregnancy immediately followed but this one was more complicated. Early complications threatened the loss but I was determined to do anything to save this pregnancy. Weeks on bed rest landed hospital stays until finally, at just 23 weeks, I was to go into labor. Transferring me to a community hospital, I begged everyone to never let me leave there with empty arms. I wanted that child to live no matter what and at all costs. I became my child’s advocate and born at just 1 lb. 7 oz. the complications were so great that no one would tell me he may survive. They always said, “he probably won’t”. But we worked as a team and I became his caregiver. I wrote things down to share from one specialist to the next, and sat at his side stroking him and touching him. The nurses never asked me to leave and the doctors allowed me to cry at his bedside. I shared my fears with the doctors and surprisingly, my experiences with my first son did not scare them, instead it seemed to pull us all together. Making us closer and helping us work harder. I would feed Matthew before work and come back on my lunch hour to bathe him. My husband would give him a feeding late afternoon and I would return for the evening. His Grandma and Grandpa would visit his bedside constantly and soon I would be able to “sneak” loved ones in to touch him and meet him. 5 months later, Matthew was home for good and today, he is perfectly healthy with no signs of his early struggle accept the pictures in our albums and scars all throughout his body from central lines, tubes and the skin that repeatedly fell off.

Years later when I began my journey to be educated and to educate others, I found that there was just not enough information. This was not about good and bad doctors, it became a search for answers, opening doors and understanding our role and responsibility to make it through a system so complex, that my tiny child survived the unthinkable chances of survival. I never once felt like Michael, my first sons surgeon was a bad doctor and not a fine surgeon, but soon found that it was the system that kept us apart and would keep us from learning from that tragic mistake. He would probably never learn from this terrible mistake and neither would other fine surgeons, so the errors would continue, people would continue die and families would continue to be torn apart, never knowing if they could have done more.

Often speaking to community groups about patient safety and education in the later 1990’s, I found that there were many others who shared similar experiences. They too had lessons but no place to share them. Their concern was that lives were being lost and their hands were tied, when all they wanted to do was help others avoid the same thing. Many of these people were healthcare professionals.

We soon began meeting and sharing stories. We were helping each other come to terms with what happened. We learned that unexpected things happen in the “best” places so it is not always about blame. But, it is always about answers. Each story had a lesson. Many of these people saw it coming. The breakdown in communication or something could have been done differently, but no one was letting them share their stories.

I soon began leaving my children and getting on trains and airplanes to go to conferences where healthcare professionals would say that there is a serious problem in healthcare safety. It was healing and invigorating to listen to. I needed to bring that feeling back home. I needed others to learn that there are many providers out there who also share their concern that the system fails, they know and they are trying to help.

And so our journey begins working together to make healthcare safer for us all…

Ilene Corina is the president of PULSE of NY (Persons United Limiting Substandards and Errors in Healthcare), a grassroots national organization located on Long Island. She is a Board Member of the National Patient Safety Foundation. Co-chairs the NPSF Patient and Family Advisory Council and on the board of the Joint Commission on Accreditation of Healthcare Organizations. She does extensive speaking engagements for healthcare providers and community members related to the patients role in patient safety. Ilene can be reached at icorina@aol.com