Justin's HOPE healthcare tumblelog

A Letter from a Hospital CEO

Living with Uncertainty

Learning from adverse medical events is imperative to surviving family members.  The clinical challenges involved in our case have never been validated by Justin’s providers so this has been a difficult task for me, to say the least. It’s not that we haven’t tried to gain the knowledge that we needed to educate medical professionals on the circumstances surrounding our son’s death and save another child.  A physician from Boston Children’s Hospital tried tirelessly to publish what we knew of Justin’s story in medical journals several years ago which were rejected citing factors that didn’t place all physicians in a glorious light.  I decided to take my story to social media teaching from the newsfeed and group applications. The following combined results may prove significant and may very well be the best that I’ve got to give for now.

Here is the case, I wrote on facebook: a healthy 11 yr. old child presents with positive staph aureus infection of his ankle joint. Temp, ankle sl sw and warm, nausea, vomit, low bp. No injury, no break in skin. On motrin and cephelexin x 2 days prior to ankle tap. Sedrate and WBC elevated. Child given general anesthesia w/suc (a known triggering agent) for I&D of ankle joint. Cardiac arrest and simultaneous severe bleed from ET tube (at the end of case). Any thoughts?? What would you do differently? What went wrong?

An Orthopedic Surgeon from South Africa writes:

“Thanks for having the courage to question and to demand compassion. Your efforts are commendable. Regarding your child’s case, the clinical picture you paint is that of a septic arthritis of the ankle. Typically in children these can occur spontaneously and without warning. They all need surgical debridement (drainage). In some cases the infection can be overwhelming and can cause a condition called shock syndrome where there is systemic compromise of the patient, in the form of cardiac or pulmonary dysfunction. Because the child generally has a healthy underlying condition, the organ systems tend to compensate very well up to a point, making it easy to underestimate the severity of the disease. In retrospect, the low BP probably could have alerted us to a more severe situation. Be that as it may, these very ill children need to be managed by experienced anesthesiologists and orthopedic surgeons. I hope that this case will lead to more openness, better preparedness and compassion.”

Sepsis was definitely involved but there was more that only the anesthesiologists would be able to answer. Were the meds correct? Was the airway secure?

Thoughts from an Anesthesiologist:

Since we now having a family history of anesthesia complications, our pre-op appointments are agonizing and will forever haunt us unless more light is shed upon the circumstances that lead to Justin’s death. The fear, the devastation and the anxiety all return to us each time someone needs even minor surgery. We all become quiet and nervous. We have learned that every surgery can be life threatening no matter how minimally invasive.

My anesthesia consult, last week, proved debilitating but also enlightening as the physician was quite adamant about the cause of Justin’s death. It seemed so clear to him. After verifying that our case was dropped, my anesthesiologist offered his opinion that the ET tube was removed too quickly. Since the bleed and arrest were at the end of surgery, all was going well until the anesthesiologist tried to remove the ET tube before it was time. In an athletic child with an increase in muscles formed at the neck (which Justin had as he raced BMX bikes and had significant upper body strength), you MUST wait to maintain an airway as it takes longer because the muscles are tighter there and they will open slower. In his hurry and lack of knowledge, he states, that the airway was lost causing the arrest and the hemorrhage with the movement of the tube. An obvious error in judgment, he implies. The x-rays will show a movement in the ET tube placement and also bi lateral pneumonia, which they did.

The scenario of a lost airway had been mentioned by other anesthesiologists in the past but they never explained it so clearly or maybe I wasn’t ready to understand it.  Muscle volume and consistency were never mentioned in athletic children as needing further precaution with a general anesthetic and more importantly when accompanied by a staph infection.  I’ve consulted with the best anesthesiologists in the world.  I had only heard of problems with muscle rigidity in Malignant Hyperthermia cases, which I also researched and was discounted.  But, can we learn more from this correlation? Did the Succinylcholine (muscle relaxant and triggering agent) cause further problems? Is there a connection with athletes and anesthesia deaths, heat stroke, etc.? Should a child be stable before introducing general anesthetic? We need to learn more.

 Did anyone consider the lasting affects on a family?

I now feel relief and despair simultaneously but a bit more closure, if this new information is even accurate. I did not agree to general anesthesia in my case and this new etiology of muscle block has since been disputed. It will take more convincing for us anyway. Families that live with uncertainty and loss will need time to trust again. Please be patient with us. A little empathy, honesty and kindness will work wonders. If only silence weren’t an accepted explanation of why a child died…this isn’t fair.

Courage “implies firmness of mind and will, in the face of danger and extreme difficulty.” When we heard Justin’s anesthesiologist speak at the depositions, 3 years later, this handsome, young, muscular physician now was over weight, balding and had aged 30 years since our contact in the OR. His gait was slow and without confidence. During discovery, he stated that Justin was aware and alert after transport which was discounted by the PICU physician and us. Did he know what really happened? Did Justin suffer? He has been the only one not to apologize for our loss. Maybe he just can’t do it, yet. Does he live with uncertainty, as we do? My family is waiting.

Addendum from Anesthesiologist in India:

“I got the main points in this story. there r only 2 possibilties. first is as u said ET placement was wrong. but there is one another possibilty is that patient was in sepic shock before.. i mean in preoperative status and if such patients receive succnyl choline.. which was given„, can cause cardiac arrest.” So, what can we teach about the case to save a child? Who wants to write the paper for me…or maybe I just did.