A child's unexplained death and a system seemingly designed to thwart justice

By Dale Ann Micalizzi | March 3, 2008

We returned home from the hospital silently and in shock. The phone rang as we made our way into what was once our safe, happy refuge. It was someone from the coroner's office making an unthinkable request following the death of Justin, our youngest child, just hours earlier. The man's voice echoed as I sat with tears streaming down my face. The partial autopsy, which we had been instructed to sign for in the pediatric intensive-care unit because it was an unexplained death, wouldn't be sufficient. "Something isn't right, and you need to retain an attorney," he said. I agreed to the unthinkable "complete" autopsy, still not wanting to know exactly what that entailed. I did beg, in a whisper, "Please don't cut my baby bad." Justin, who was 11, had gone to St. Peter's Hospital in Albany, N.Y., in January 2001 with an infected ankle. All that was needed was an incision and draining of the infection. What could have gone so terribly wrong? The immediate silence from the physicians, nurses and the hospital's chief executive officer was deafening. I felt connected with the staff, having worked for an HMO in the area for a number of years. Now, all I was seeing was a classic pattern of denial and defense. I never wanted lawyers involved. I never wanted to question a physician's judgment or a hospital's care. There was no other option available to us; mediators, ombudsmen, patient-safety officers and patient advocates were rare just six years ago. The movement toward quality improvement was almost nonexistent. My husband and I had nowhere to turn.

A recent scholarly article entitled, "Disclosing unanticipated outcome to patients: The art and practice," in the September 2007 Journal of Patient Safety by Thomas Gallagher, Lucian Leape and others, reinforces the significance of communication, empathy and safe practices following an adverse medical event for all parties. Real-time responses following adverse events are imperative. The article also reinforces that "available evidence suggests that open communication of unanticipated outcomes occurs infrequently."

Three years later, I sat in a law firm's office clutching an angel trinket that a friend had gifted me engraved with the word "Strength." Our lawyer sat beside me. He had the physique of a football player, and I felt safe. The three attorneys who were representing Justin's orthopedic surgeon, his anesthesiologist and the hospital sat across the long rectangular table with their eyes focused down as they leafed through a 6-inch-thick black binder that revealed my son's records and the results of the hospital's investigation. This was information that I had begged to see for such a long time and have still never seen. In the intervening time I had searched for the truth, only to hit my head against walls of silence.

Will you represent us?

I had also engaged in an incredibly frustrating journey to find a lawyer willing to take on this case. I'm not sure if we experienced cronyism, the old boys club or an unwillingness to challenge the status quo, but lawyer after lawyer turned us down. "How many fields did your 11-year-old son plow?" a female lawyer asked. She sounded serious, but I thought, "Don't you have any children?" and "What century are you living in?" Nevertheless she may have been right. Stay-at-home moms, the elderly and children have little monetary value in legal matters. Also, unlike 42 other states, grief for surviving families is not compensable in New York under a law passed in 1847. Thus, it isn't worth a lawyer's time to accept such a case unless the evidence is overwhelming and an easy settlement attainable. Some would have folded at this point, but I had a duty and a passionate desire for justice. Justin was our child, not the hospital's. We were owed the truth. And money wasn't the issue for us. A federal judge in Washington, who is a family member, recommended that we educate ourselves on how such cases work. Traveling several hours west, my husband and I met with a law professor and attended classes at a law school to learn the rules of the game. Finally, we learned something about why lawyers were shying away from this case. A lawyer told us to find someone outside the area because the orthopedic surgeon we were to sue was an expert witness for most area law firms and the firm "needed him" for more profitable cases. One lawyer did agree to take the case but we became wary as he requested a substantial payment for the expert review of what we soon learned were inaccurate and incomplete medical records. The kicker was that we couldn't contact the expert, ask any questions or even know who he was. I was seeing a clandestine meeting in an alley in my future. We declined. Others suggested filing litigation against physicians, nurses and hospitals who had nothing at all to do with the event. Besides this being unfair to us, it was unfair to caregivers who could have been dragged through the mud unnecessarily. Our ethical standards and values never left us in the depths of our despair. Parents who have experienced the nightmare of losing a child would never cause undue pain recklessly to anyone. We know what it feels like. Do the right thing and the right thing will happen, a friend continually reinforced. Finally, a pediatric surgeon from the Midwest assisted us in finding a lawyer, who upon review of the material quickly stated that Justin never had a chance to make it through the surgery because of improper pre-op procedures and medical care following the cardiac event.

'Discovery' leads to cruelty

We filed the action a few weeks before the statute of limitations had run out. Our only purpose behind litigation was discovering the truth, and we were prepared for the long haul. Money was never mentioned or of importance to us and never exchanged hands. We needed and deserved answersperiod. We were fighting for our son and other children. My deposition was scheduled the first day of discovery. The lawyers questioned me for approximately seven hours. Since our previously healthy son had died during a minor surgical procedure under general anesthesia behind the closed doors of the operating room, there was no reason for his parents to be questioned at all, or so extensively. Our only crime was having the courage to expect accountability, honesty and an ounce of empathy from caregivers that we trusted with our son's life. I reminded myself of the law professor's words and the words of physicians that had assisted me. "They will try and break you downstay strong. Sit there like Mother Teresa. They don't care what happened, and they are only representing their client. They will badger you until you drop the case." I was prepared for the worst while always wondering how anyone could be cruel to us. We had done nothing wrong. I answered every question for the next several hours about my mothering skills (which, by the way, are excellent). Our love for our children is beyond description. Next, the focus seemed to shift to my research. Threats to confiscate my computer arose. The lawyers for the other side wanted the names of all the physicians whom we had contacted for assistance. I would have put myself in legal jeopardy by refusing to reveal their identities; there was no way that I would throw innocent people into the mix even if it would have made our case stronger. Thankfully, I was instructed by my lawyer that I did not have to answer the question. The questioning continued, and I knew every detail of what Justin had eaten at all of his meals, his temperature every hour, the orange fencing blocking the entrance to the emergency department. I remembered each of the seven attempts by the resident to draw blood, each unsuccessful. I remembered the expressions on everyone's faces and their words prior to Justin's death; the cranberry-red blood in the bag to the left side of his bed, three-quarters full. I remembered squatting on the floor, rocking in a fetal position. Our 15-year-old daughter brought her teddy bear and a picture of her and Justin and placed it on his pillow. The faithful PICU nurse taped a cross to his chest. He arrested five more times at the PICU as we watched. ... Our 18-year-old son stood silent next to his baby brother watching him die, to be forever affected by this loss. Children's grief can be just as debilitating as parents'. Mothers remember.

Silence isn't golden

The visions of that day still haunt me as if it were yesterday. We are reminded daily with continuous commercials about the hospital's "compassionate" care. They literally nauseate me. The PICU physician and his nurses gave the best hugs and validate the true meaning of a caregiver. I try to remember their compassion. It keeps me going. Would a caregiver remain silent if they knew an autopsy on a child would be inconclusive? Do some consider children only blood and bones? Do risk managers and lawyers bury information that could save other children's lives? What happens to the evidence when it's never shared publicly? Does anyone learn from adverse events through silence? I write because I still do not understand. Why has it taken so long to change this behavior? Why are so many still not trying? The physicians were questioned months later. Their discovery interview was brief and revealed that the orthopedic resident completed our son's surgery, not the orthopedic surgeon. We had had no clue until that confession three years after the fact. The anesthesiologist stated that Justin was awake and aware after transport to the PICU when he was actually in a coma. Why did he lie? The remainder of the questioning was the game that I had been warned that it would be. The defense lawyers had no intention of sharing the truth. It was almost theatrical at one point as we watched one of them become nearly hysterical and hit the back of our attorney's chair. A judge was called in to referee. We attended all depositions. The physicians did not attend ours, and I might add, did not attend the root-cause analysis, morbidity and mortality review or the quality assurance meetings. We, of course, were excluded from those meetings. Doesn't it make sense to have those closest to the case present? At the last minute, our lawyer simply dropped our case in the face of the stonewalling from the caregivers. After Donald Berwick, president and chief executive officer of the Institute for Healthcare Improvement, intervened, we got an apology of sorts from the hospital, but we also had to sign a document stating we would not litigate against it in the future. There was no gag order, however, which is why I am free to write about it, free to start a foundation called Justin's Hope, free to speak about it whenever I am invited to do so.

An apology means little if there is no disclosure and no effort to fix the problems that caused Justin's death. Aaron Lazare, in his seminal book, On Apology, writes: "The lack of remorse and forbearance indicates that the wrongdoer may not share the moral standards of the rest of society and, thus, is at risk to repeat the wrongful act."

The years of anguish and torture remain raw. I keep remembering the excuses: "Medicine is an imperfect science" and "Lots of people die in hospitals" and "Sometimes there are no answers" and "You signed the consent forms" for surgery. Our experience following Justin's death might have been so much different if the caregivers listened to their hearts instead of their lawyers and risk managers who follow the time-honored practices of silence, obfuscation and denial. It takes courage to stand up for your convictions and your patients. We can do better.

Dale Ann Micalizzi is founder of Justin's Hope, a not-for-profit advocacy group, and advocate for pediatric safety and transparency at the Task Force for Child Survival and Development, Decatur

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