Consent and Disclosure in Pediatric Heart Surgery

Consent and Disclosure in Pediatric Heart SurgeryThe Story of James Mannix (United States)Mary Ellen MannixEditors’ NoteMary Ellen Mannix and her husband Michael learned from a prenatal echocardiogram that their fourth child, James, had a high chance of being born with a heart defect—a coarctation of the aorta. The baby otherwise appeared to be healthy. The pediatric cardiologist told the couple that the diagnosis could not be confirmed until delivery and that the treatment at that time would probably be relatively straightforward—either drug therapy, balloon dilatation, or an operation to repair the aorta. “We are not talking open heart surgery here,” said the doctor. When James was born, it was confirmed that he had a discrete aortic coarctation, a relatively mild form of the defect. What follows is Mary Ellen’s story of what happened after James’s diagnosis.Coarctation of the aorta is one of the more common congenital defects, accounting for 5–10% of all congenital heart disease and occurring in 1 in every 1000 births. It is characterized by a narrowing of the aorta in the area of the ductus arteriosus, a  fetal  blood  vessel  conduit  between  the  pulmonary  artery  and  the  aortic  arch  that  normally  closes  shortly  after  birth. Prenatal detection of aortic coarctation, although highly desirable, carries a high possibility of error. Mild cases may not be detectable prenatally, and some people may not show symptoms until middle age. In more severe cases, an infant may appear healthy until several days after birth, when the closing of the ductus arteriosus can lead to diminished blood flow, heart failure, and shock (Matsui & Gardiner, 2009; Gargiulo et al., 2008).The usual treatment for an infant diagnosed with aortic coarctation is surgery. Newborns with an unclear diagnosis may be observed in the hospital for several days, whereas a baby with a confirmed diagnosis is likely to be stabilized on medication (prostaglandin)  until  surgery  can  be  performed.  The  repair  of  a  discrete  coarctation,  like  the  one  James  had,  is  usually accomplished  through  an  incision  in  the  left  side  of  the  chest  called  a  posterolateral  thoracotomy  and  does  not  entail cardiopulmonary bypass. In more complex presentations, the child may be placed on cardiopulmonary bypass to repair the coarctation and accompanying heart defects in a single operation through a sternal incision. Mortality in surgical repair of aortic coarctation is generally reported to be low (less than 1%) (Rosenthal, 2005).A Big BabyJames was delivered at 39 weeks in a planned delivery. He was the largest of my babies, weighing 8 pounds, 4 ounces and measuring 21.5 inches. He had a raspy cry, a full head of hair, and very light eyebrows. The obstetric team was surprised that he was so big because babies with heart defects tend to be small. They immediately took him to the warming table to assess him and they told me he looked great. He had high APGAR1 scores of 9 and 10, but because he had the prenatal diagnosis of coarctation of the aorta they wanted to perform an echocardiogram in the neonatal intensive care unit (NICU). We were told that as soon as they were finished we would see our baby.Four hours went by. Finally my husband found a wheelchair, put me in it, and we made our way over to the NICU. As we approached the NICU we saw an isolette heading out. It was our son. They were about to transfer him to the pediatric heart center without telling us. At that point, we had some discussion with the pediatric cardiologist who confirmed that there was a discrete, or simple, coarctation of the aorta. James was breathing well on room air and he was  not  in  urgent  need  of  anything.  The  physician  told  us,  “If  he  were  my  child,  I  would  want  him  down  there,” referring to the pediatric heart center, so off he went. My understanding was that this was only for monitoring.Is There Anything We Should Know?

I joined James at the heart center a day later. He was on room air. He was eating from a bottle. He was not in distress. That night my husband signed a consent form for repair of the aorta coarctation. Our understanding was that this meant either  a  pharmaceutical  intervention  like  digoxin  or  possibly  some  kind  of  catheterization  to  balloon  open  the narrowing of the aorta, which was terrifying enough in itself. The surgeon was a world-famous pediatric heart surgeon. I remember asking him specifically, “Is there anything besides general anesthesia that you will be doing that we should know about?” He replied, “No, nothing at all.”We handed James off and waited. Later that day when we finally saw him he was intubated. He had a scar running down the middle of his chest. He had tubes coming out of the side of him. No one had told me or prepared me that this was a condition that I could possibly see my son in at 2 days of age. I felt stupid. I did not question it, but did ask, “What now?” The nurse said, “Well, the next time you come back to see him you will probably be able to breastfeed him, because we are going to take the breathing tube out.”At that time we had to leave because we were not allowed to be in the pediatric cardiac intensive care unit (PCICU) until  visiting  hours.  They  were  very  prescriptive  about  when  we  could  be  with  our  son.  It  was  late  in  the  day,  but visiting hours did not begin until the end of rounds at 8:00 p.m. At 7:40 I remember looking at the clock and knowing that I needed to be with him right then and could not wait anymore. My husband called the PCICU to say that we would like to come down and see our son, at which time they told us that it was not a good time, and that they would call to tell us when we could come down.A Sudden and Serious EventA few minutes later there was a knock on the door. It was a physician and a nurse, neither of whom I had ever seen before. They told us there had been a very sudden and serious event, and they repeated those words again. I tried to ask them several times in different ways, “What does that mean? What happened?” They would only say that it was very sudden and very serious, and they ended with, “We will let you know when you can come see him.” This was around 8 o’clock in the evening. It was after midnight when they called the room and said that we could come see him.When I saw my son, he had a breathing tube taped very tightly on his mouth. His chest was open. There were tubes coming directly out of the center of my son’s chest. There was a square elastic transparent bandage over his heart, and that was all there was between me and his heart. He was positioned more like a frog than the “powerhouse” picture I had taken of him as a newborn. He had a strange grayish-green color. There was blood all over the isolette.Somebody asked if we would like a priest. I said no. I was not ready to go to where I think they wanted me to go. My husband wanted to know what had happened and again all they would say was that it was a sudden event and a very serious event.They  had  him  connected  to  life  support  on  an  ECMO  machine.2 James  spent  Friday,  Saturday,  and  Sunday  on  the ECMO machine. On Monday morning when I saw that he was not attached to anything I nearly passed out, because I thought he was dead. They told me not to worry, that he was off ECMO and was just on the ventilator.He was ventilated for the rest of that week, Monday through Friday, and he died on Saturday as a consequence of a ventilator-associated pneumothorax, a hole in the lung that is caused by being on the ventilator.Insult to the Brain StemThe day before the pneumothorax showed up the nurses started asking me questions. “Do any of your children have epilepsy? Do you have any seizure disorders?” They said they had noticed my son did this little shaking thing. I had noticed it, too. They ordered a neurologist consult. My husband left to take care of our other children, and I was alone to receive the consult information from the neurologist.The neurologist said, “Your son has suffered serious insult to his brain stem and his cortex. He was clearly born brain healthy and something happened either during or after surgery.”

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I could not understand, it and the neurologist repeated himself a few times. He was sitting with me in the room and writing things down I had told him.I said, “I work with special kids. If this means I have to work a little extra with him, I can. He will be able to crawl, right?”The neurologist said, “Mrs. Mannix, your son suffered serious insult to his brain stem and his cortex.”He wrote it down so I could look it up. Then he ordered a reduction in the medications my son was on, which were mainly paralytics. After they were reduced James started to open his eyes and was more reactive. They finally asked for  some  breast  milk  for  him,  which  I  had  been  expressing  the  whole  time.  I  was  pretty  much  filling  up  the  unit’s freezer with my breast milk, to the point that they had to ask me to please find somewhere else to store it. But James did get to have some breast milk in those few hours.When  the  crisis  came  the  next  day,  I  had  left  James  to  go  rest.  I  was  very  specific  and  told  them  that  if  anything happened they were to come get me. When they knocked on the door and woke me up, they said the surgeon had taken my son for emergency surgery to address the pneumothorax.At that point, probably after the conversation with the neurologist, I had crossed a bridge. I asked why they had taken him for surgery and said I did not want them to do anything more to him. I told them that he had suffered enough, he had three siblings who wanted to meet him and hold him, and as a mom I was lucky enough to be there when he was born and I wanted to help make the transition into whatever his next life was going to be. I wanted less pain for him than what clearly this life had been.The Size of a 9-Month-OldThis conversation took place around 7 o’clock in the morning and yet I found out later from the records that he actually did not go into surgery until 11 o’clock that morning.When they called us to come see him after surgery, the PCICU doors opened wide and there in front of me were all the blue scrubs circling the isolette that contained my son. As I walked over to him,I saw that he was swollen to the size of a nine month old. He was black, blue, and purple. His hand was in a fist and was completely black. They had performed a thoracotomy to repair the pneumothorax and while they were in there they had revised the coarctation repair they had done the previous week. To do this they had put him back on ECMO. Once again, he had tubes coming out of his chest.I knew as soon as I saw my son in that state that he was gone. He was dead. And yet a nurse brings over a little tub of baby bath for me to give him a bath, because he still had blood on his chest and the side of his arm. I never dared to lift the blanket on the side where the open surgical wound was, and where the wound was still draining.My husband asked where the surgeon was. The social worker replied that he had left his assistant there to answer our questions. At this point, that was not enough for us. Fortunately for us, or unfortunately for the surgeon, we ran into him in the hallway. He was already out of his hospital scrubs and in street clothes.My husband asked him what had happened and who was overseeing the care over the weekend to coordinate all these different pieces to manage our son’s condition. The surgeon told us that he did not work on the weekend and would not be available to talk with us. My husband asked again who would be there overseeing our son’s care. The surgeon did not know. His response was, “What difference will knowing that make now?” With that, the surgeon walked away.“You Trusted Us”We spent 24 hours watching our son in that shape and after a conversation with the same pediatric cardiologist who had said “we were not talking open heart surgery here,” my husband asked him, “You know, it was just a couple of

months ago that you were telling us that this was nothing for us to worry about, that this was not a big concern. What happened?” The cardiologist’s reply was, “You trusted us.” That was all he said.The last thing that we were asked was to agree to turn off James’s life support. My husband was adamant that the surgeon be involved in that decision. The surgeon did not make himself available, and he did not come back to the hospital. It required my husband’s pushing the clinicians, the cardiologist, and social worker to call the surgeon. We had a phone consult in the PCICU and agreed as a team that nothing more could be done for James and that we would turn off the life support.After the phone call, which was at 8:00 a.m. on Saturday, we were told that we could not stay in the PCICU, but that they would call when we could come and be with him. I interpreted that to mean that when they were ready to turn off the machines I would be able to be there and hold my son. Three hours passed and they called us and said that we could come down. When the PCICU doors opened this time I saw a bright light at his isolette and he was all swaddled up.  He  had  not  been  swaddled  before,  ever.  There  were  no  machines  attached  and  there  were  a  couple  of  rocking chairs set up. The nurse pulled the drape around us and they told us we could hold him and stay as long as we wanted.Somebody placed him in my arms and he was ice cold. I felt so bad, I could not look at him. I still apologize to him for that. My husband held him for a little bit and handed him back to me and a few minutes later I put him back in the isolette  and  we  walked  away.  It  was  the  last  time  I  saw  him.  There  were  no  social  workers,  no  chaplain,  nobody escorted us back to the room. We placed all that we had brought for our son, his blanket, and his outfit that he was going to wear home, into a wagon. We packed up our stuff and dragged the wagon through the hospital and brought it home.Finding AnswersThe day after James’s funeral I handwrote a note to the hospital asking for anything that had his name on it. I wanted all his records. I wanted something of his that I could keep for the rest of my life. We got a manila envelope back with five or six pages of lab values. After 11 days in the hospital and repeated surgeries, that was it!I found an article about a mom with a baby boy who also had a coarctation of the aorta, who happened to be operated on by the same surgeon, and had had a bad outcome. I reached out to the authors of this article and asked to talk to the mother. They referred me to her attorney, who had been their source of information. The mother was not ready to talk to me, but the attorney was quite ready to offer his support and help me find answers. I was not looking for an attorney; I was looking for someone who understood how this could have happened. But finding the attorney turned out to be how we accomplished that. If I had not pursued litigation we would have never known any of what we now know.On the day before what would have been James’s fourth birthday, we received a call from our attorney. There had been a settlement offer of $750,000, to be accompanied by a gag order not to discuss the case. My counteroffer was to ask for fees, which my attorneys said were about $45,000 to $50,000 at that point, and a 5-minute conversation with the surgeon. The answer was no.So we went to trial. We found out much that we had not known, like the fact that there had been a broken ventilator in surgery and the details of breakdown in handover communications between clinical teams. We found out that they had electively taken the breathing tube away from James as soon as we had left the PCICU that first afternoon after his original surgery. He had never breathed above the ventilator when they did that. They took blood gases every 10 to 15 minutes, but maybe nobody was reading them, because the trend was that the carbon dioxide was rising and the oxygen saturation levels were dropping. This downward spiral continued until his oxygen saturation was down into the 50s and his carbon dioxide was up into the 80s, when normal is 40–50. Then they gave him morphine, and 20 minutes after that he crashed. He cried out and somebody looked over and saw that he was gray. This was the “sudden, serious event” that had caused James’s brain damage.Although we were told that there was somebody with our son all the time during the hours that we were not allowed to be there with him, nobody was watching him closely. The doctor who was the attending physician had been called

in to cover for another doctor. He had received a quick handoff and gone to get some dinner. The nurse practitioner was in the cafeteria. The bedside nurse was in the break room.The  jury  found  a  verdict  of  neglect  against  the  hospital  clinicians,  but  they  were  not  held  responsible;  my understanding is that the jury thought James’s providers were negligent, but because of his heart defect did not think the negligence caused his death. After my attorney’s mistrial motion was denied by the same judge who heard the case, I put on the brakes and told them that I had most of the answers to my questions and that I thought we could live with what we did not know. We did not want to pursue further legal action.ConclusionI went back to graduate school and got a master’s in education in restorative practices, which is a conciliation method. I organized a community project called James’s Project that engages in a range of projects to support newborn well-being,  including  patient  advocacy  programs  for  infant  caregivers.  We  championed  a  bill  that  became  law  in  2014, requiring pulse oximetry screening in newborns in Pennsylvania. I wrote a book about James’s story because it is a tough story to tell all the time, but also because I needed all the stakeholders who were involved to get a full picture of what really happened. My book is called Split the Baby: One Child’s Journey Through Medicine and Law (Mannix, 2011). The title was not intended to be graphic, but actually quotes my attorney in the motion for a mistrial because he  likened  the  jury’s  verdict  to  the  Biblical  story  of King  Solomon  who  recommended  splitting  the  baby  under contention as a way to resolve a conflict.In the course of writing the book, I reached out to most of the clinicians who were involved and learned more about James’s case. For example, I reached out to the doctor who had come to our room and told us there was a sudden event,  the  same  doctor  who  had  gone  out  to  dinner.  He  and  I  sat  down  and  had  a  conversation  in  the  middle  of  a hospital lobby and he told me that he had just completed a 24-hour shift when he was called in to cover for another physician. He feels that he failed his patient, our son and us. I feel that they and we failed our son. But I also have to take ownership of this failure and realize that this is part of my experience.Case DiscussionIn the early days of pediatric cardiac surgery, mortality rates were routinely above 50%. During the past three decades, survival among children born with even the most complex cardiac defects has increased substantially. By 2005–2009, discharge mortality for index cardiac operations reported to the Society of Thoracic Surgeons’ congenital heart surgery database had fallen to 4.0% (Jacobs et al., 2011). Still, there is certainly no room for complacency. Mortality rates between  institutions  vary,  indicating  potential  modifiable  factors  related  to  case  volume,  experience,  and  practice variability. Preventable adverse events may occur related to both technical and nontechnical factors associated with decision making, leadership, and management (Jacobs et al., 2008). Complications result in higher morbidity, long-term disability, decreased quality of life, and increased cost to the health system.The field of pediatric cardiac care has received worldwide recognition as a leader in quality and patient safety and has advocated for system-wide changes in organizational culture. The field has many complex procedures that depend on a sophisticated organizational structure, the coordinated efforts of a team of individuals, and high levels of cognitive and technical performance (Galvan et al., 2005). In this regard, the field shares many properties with high-technology systems in which performance and outcomes depend on complex individual, technical, and organizational factors and the interactions among them. These shared properties include the specific context of complex team-based care, the acquisition  and  maintenance  of  individual  skills,  the  role  and  reliance  on  technology,  and  the  impact  of  working conditions on enabling great team performance.Several factors have been linked to poor outcomes in pediatric cardiac care, including institutional and surgeon- or operator-specific volumes, case complexity, team coordination and collaboration, and systems failures (deLeval et al., 2000). Safety and organizational resilience in these organizations ultimately is understood as a characteristic of the system—the sum of all its parts plus their interactions. Interventions to improve quality and strategies to implement change should be directed to improve and reduce variations in outcomes. An obstacle to achieving these objectives is a lack of appreciation of the human factors in the field, including a poor understanding of the complexity of interactions between the technical task, the stresses of the treatment settings, the consequences of rigid staff hierarchies, the lack

of time to brief and debrief, and cultural norms that resist change. Technical skills are fundamental to good outcomes, but nontechnical skills—coordination, cooperation, listening, negotiating, and so on—can also markedly influence the performance of individuals and teams and the outcomes of treatment (Schraagen et al., 2011). It is only through open communication and collaboration within and between organizations that we can foster excellence in clinical practice and innovation in pediatric cardiac surgical care.In James’s case, the system was clearly not designed for delivering reliable care. Some of what happened to James may have happened because clinicians lacked what has been called “psychological safety” and were afraid to speak up (Kennedy, 2001). This case also highlights the important role of patients and families. This case and others should stimulate discussion about the barriers that teams and organizations need to overcome and the changes that teams and organizations need to develop in order to engage families and deliver safe and resilient care.



Based on your reading identify the most important fact(s) surrounding the case as you see them from a risk standpoint.

4§Identify the key risk issue in the case study, such as but not limited to communication, health literacy, documentation, etc.  Then expand on this key issue, what were the barriers or why was this an issue in this case.  The student is encouraged speculatively expand on what the issue was and should be able to support that opinion.§Recommend and specify an alternative course(s) of action(s).§What change(s) if any are necessary to prevent this event from happening again.  What might best practice look like in this instance or is this an internal policy issue?  What is the support for this position?§Did the parties act ethically, why or why not?§If this case study represented any regulatory compliance issues, indicate the specific regulatory body and what the potential consequences might be to the healthcare organization.§Include any financial impact of this case such as but not limited to; was there lost revenue, a law-suit with damages, ongoing legal expenditures, reputation damage, etc.§Provide at least two critical questions you had as a result of reading the case study?

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Consent and Disclosure in Pediatric Heart Surgery


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