This post is part of the 1000 Voices Speak for Compassion initiative. Today is United Nations World Day of Social Justice. Please check out other ‘Voices’ by using #1000speak on Facebook and Twitter.
The following is taken from excerpts of the book, Split the Baby: One Child’s Journey Through Medicine and Law (2009)
I was just finishing up a shower when there was a knock at the door. It was in descript, neither forceful or melodic. As I came out of the bathroom and turned, a tall, slender man in a white lab coat stood with hands clenched by his sides. A young blonde stood beside him with her gaze focused on him. Having set forth some base information to my husband the white coat was forced to repeat everything to me, the mom.
I remember the deep breath he took which made time pass more slowly. There must have been some introduction. I’d never seen this person before and his words were the key to a permanent place in my memory. One key in and nothing to free it. He was polite, soft-spoken, yet his speech was burdened by a thick accent and heavy woe.
“Mrs. M, there has been a sudden event.”
I couldn’t understand. I looked to my husband who was leaving the questioning to me, just as the speechless nurse left responsibility for answers to the man in the white lab coat. From that moment on, even though we would only see each other a handful more times, Dr K and I would forever be entwined in a strange ethereal connection as missionaries for safer care for heart babies because of this one. We just didn’t know it then.
“What do you mean? What happened?”
“Your son has had a serious event. It was very sudden.”
“Can I see him?”
“It is very serious.”
He rubbed his fingers against each other as his hands balled into two fists at the end of his arms on each side of the white coat.
“It was a very sudden and very serious event. They are working on him now.”
Serious. Sudden. Event. Event. Event. Event. Event. Event.
As many times as I asked the same question looking for a new response the answer remained constant.
“Your son has had a serious event.”
His body language didn’t change course either. The hands. The hands kept their own rhythm. Unaccustomed to trusting my maternal instincts in an environment they were never before tested, I could not even imagine what these hands had done. The fingers massaged each other with the thumb as leader. Like a well rehearsed marching band they closed together in a four count around their leader and then repeated their dance. It was rhythmic, tense and peculiar. Not until all the pieces were revealed, did I understand the lyrical movements. The hands were spokesmen for the walnut sized heart and soul it encapsulated just moments before our meeting. I was left with a strong, palpable, disconcerting anxiety. The kind that makes you want to do something. The kind that either subscribes everything to memory or removes everything. The kind that does not allow the body to remain still but it can’t move with force either. Collapse is within reason. Adrenaline is surging. The mind is coursing through an uncontrollable series of bad thoughts yet each one unproven and unmatched to the true horror. And the lessons of a life lived in submission and respect for white stubbornly not letting go. Over the next several hours and eventually days the anxiety robbed me of every knowledge, ideal, confidence, and belief ever held. I didn’t know then what the doctor knew. My son had died needlessly and he brought him back to life through a traumatic event. Even though this baby would die within days, his tragic life would leave both of us with scars and in need of compassion.
Stupefied I meekly and with a sense of embarrassment at having to repeat myself again asked, “What happened?”
It took years, multiple lawyers, and an indescribable amount of strength that forced the doctor and I into the same room again so the question could be begin to be answered. We saw each other first in the courtroom hallway and caught each other’s glance.
With no words, he knew I wished he wasn’t there and I knew he wished my son was.
His eyes were still expressing apologies for his profession.
At its beginning, I personally requested Dr. K not be placed on the case as a defendant. While at the hospital he did not say why he kept apologizing but I felt his empathy. He had expressed remorse and showed me some compassion. I would need (actually, demand) much more compassion from friends, families, and strangers as a heartbroken, disillusioned, and confused grieving mom. However, Dr. K was stuck between the rock of wanting to continue serving in his chosen profession (in which he has great skills) and the hard place of serving an ironically uncompassionate industry where risk and liability trump basic human needs. He had information. He knew the play by play of the killer of this 11 day old baby.
As I read his deposition, I kept stopping and re-reading. It was an honest and forthcoming testimony. Certainly not what was expected from someone who appeared to be running away with the rest of the hospital’s risk management department. Through no fault of his own and through nothing he was born with this adorable and very young patient of the hospital had endured needless overtreatment resulting in medically induced trauma and preventable errors that ultimately killed him.
“Do you have a recollection of the treatment and care of [this baby] postoperatively on October 4, 2001 when you first arrived?”
“Yes, Dr. R gave me the sign out on patients including [the baby boy]. He told me he was operated on earlier in the day and was removed from the mechanical ventilator support about one, one and a half hours before I arrived, and we reviewed the patients’ nursing sheet that you have in front of you.”
The conversation flowed as most other depositions did. Logistics and groundwork were laid. Point by point. Lab value by lab value. Minute by minute.
His arrival that unfortunate evening was a bit delayed as he was arriving from his laboratory an hour away. It was not a normal schedule for him to work on a Thursday evening either. He agreed to switch his Friday evening shift for another’s Thursday. As far as risk management was forced to unveil, this baby died from a host of “never events” including failure to rescue, ventilator associated pneumothorax, unnecessary surgery, sepsis, hospital acquired infections and much more.
Little did the doctor who had his own infant at home and was coming off of a long shift know that simply by helping a co-worker out that day he would be party to life changing events for so many. Little did I know the machine that the healthcare system is. That not only could it eat an 8 lb 4 oz baby boy alive, it does the same to many of its doctors and nurses that have sworn to serve its clients. Only through perseverance, tears, conversation and compassion did I begin to understand the ache of humanity on the other side. for those who love to hate lawyers, it was my lawyer that showed me the most compassion and willingness to listen. He also allowed the seeming oxymoron that I could forgive the doctors responsible for my son’s death, while still needing the truth so we could stop this from happening to another.
Perhaps because the trial lawyer was an MD himself.
There still remains missing pieces to my son’s tragedy. One big one. Dr. K wanted that piece as much as I did.
Court testimony revealed that the telemetry strip for the time of my son’s initial event went missing.
“For a patient that is otherwise doing well, I would go like 55 up to 80. Normal values in a newborn they’re like 60 over 80, but it’s not unusual after an operation to have some ventilation profusion mismatches.”
“At 4:30 there’s a gas that reads 7.39, 58.9, and then 64 the O2.”
“It looks like the last saturation by Pulse oximetry reading was at 4:00 or 4:10 time period. I don’t see any afterwards until it looks like 19:40 or so. Any idea why there is no recording in those spaces?”
The lawyer pressed, “Is that something that would typically be recorded?”
A definitive, “Yes.”
In deposition and again at trial all the medically trained witnesses testified that this piece of the medical records would be most helpful in explaining to the jury what happened.
The healthcare team did not save the tracings. Hospital risk managers did not furnish them. It unfortunately was not a piece of information discussed at sign off. The compassionate doctor would have liked to have that piece of information.
I would too.
What we do have is a shared motivation to help other babies have safer care and better treatment experiences.
For reasons I cannot fathom that connection was made by forces greater than myself or the doctor. Trust between patient and physician is paramount for a patient. Confidence between physician and patient is critical to the physician. Both can become broken. The only way to keep going is to be willing to sit and listen and truly hear the pain on the other side. Then we understand. Then we have compassion.
There is no way he does not remember holding my son’s walnut sized heart in his hand not by choice but during trauma. There is no way I will ever forget the compassion he showed me no one else in the hospital dared.
It’s been 14 years now. I am certain we both hope compassion is a part of every adverse event in medicine today.
Have you seen it?