James was delivered at 39 weeks in a planned delivery. He was the largest of my babies,

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James 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 a 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 Event

A 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 Stem

The 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.”

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-Old

This 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 to 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 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 Answers

The 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.

Conclusion

I 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.

Questions

1. The overarching theme in James’s story is the absence of meaningful informed consent. At what points in James’s diagnosis and treatment do you see the informed consent process breaking down? What do you think James’s healthcare providers should have done differently to more effectively communicate with James’s parents?

2. James’s parents felt that they were not allowed to participate in their son’s care and were excluded from key moments that would have allowed their baby to experience warmth and human contact. What policies do you think could be put in place to prevent this from happening? How do you think the absence of such policies might have affected James’s care?

3. James’s initial downturn came when he was not closely observed after being removed from the ventilator. This was apparently exacerbated by a poor handover process. What handover practices could be used to ensure effective communication of key information and oversight of patients?

4. James’s parents were given little information about what had happened to their son, either while they were in the hospital or when they requested their son’s records. This ultimately led to a protracted, costly legal battle. The parents say their legal course had only one purpose—to find out what had happened to their son. There are now programs that are designed to prevent this sort of adversarial outcome by responding openly and proactively to adverse events. How do you think the presence of such a program might help avoid unnecessary legal action and help healthcare providers learn from their mistakes?

5. Which of the core competencies for health professions are most relevant for this case? Why?