How I saved my daughter from a medical error

We had no choice in becoming the “crazy” family that left a hospital against medical advice. Our four-day-old daughter was completely helpless, her condition deteriorating and the staff was ignoring our concerns. I carefully turned off the blue lights, removed her from the isolette, placed her in a car seat and eloped from the pediatrics unit.

As a hospitalist, I constantly obsess over medical errors. The majority are more subtle than the headlines (wrong-sided surgery). They are things like delays in care, medication errors or communication breakdowns between the health care team.

Out of fear of my potential involvement, I consistently double check my work (even after I’ve left work). Thankfully, as an additional line of defense, I have diligent colleagues like nurses, pharmacists and specialists looking out for patients.

Yet despite meticulous efforts from individuals, the scale of medical errors in the United States is terrifying — now the number three cause of death (after heart disease and cancer). Individuals inevitable make mistakes sometimes, but how institutions learn from them and implement changes is what ultimately seems to be broken.

When our newborn daughter was admitted because of her elevated bilirubin, I witnessed firsthand how errors can cascade. I hadn’t thought about neonatal jaundice since medical school, so I did a quick review on route to the hospital: “Infants require phototherapy to break down bilirubin and prevent brain damage (which results if bilirubin stains the brain tissue).” Nonetheless, I wasn’t worried since it seemed like a fairly common condition. The sense of calm change quickly after we arrived at the supposedly “famous” children’s hospital.

The first red flag was that, despite our pediatrician arranging a direct admission, no one was expecting us. After we finally got a room, the required equipment was not on the pediatric ward. When it was retrieved, the nurses seemed unfamiliar with how to use the phototherapy apparatus (essentially blue tube lights from the ’80s). Finally, the residents seemed in no hurry to initiate time-sensitive interventions, instead performing a routine history (despite already knowing the diagnosis). Unsurprisingly, the labs came back worse due to the two-and-a-half-hour delay since our arrival. After all this, my wife (also a physician) began crying because she was distressed by her lack of confidence in the care.

We were shocked to be left alone to provide feedings and monitor our daughter, while the nurses and residents visited three times in 10 hours. At one point when my wife questioned the incorrect setup of the apparatus (being too far from the patient), she was told it was “fine.” When we innocently asked whether an IV should be placed, our nurse seemed annoyed. I woke up dazed at two a.m. to the nurse nonchalantly reporting that labs “hadn’t come back as hoped.” I became truly alarmed when the resident plainly explained that the plan was to “stay the course.” The words “brain damage” reverberated in my mind, and I pleaded to see the attending physician, emphasizing my worry as a father (and a physician). I initiated our discharge plan when I was informed there was no attending present overnight.

The NICU team showed up just after our escape, and I reluctantly came back up to the ward. The critical care attending expressed disbelief at the management and escorted us personally down to the NICU. Phototherapy with modern fiber optic equipment was started after a nurse promptly placed an IV and initiated fluids. Fortunately, our daughter’s condition improved quickly, and she was discharged in 24 hours.

Afterward, we wrote a polite letter to the hospital — clearly stating that our only goal was to prevent a similar episode for another family. We expressed gratitude for the NICU staff and expressed sympathy for the challenges that residents face in training. We highlighted the disorganized care, a lack of attending physician support and perhaps most importantly the fact staff didn’t respond to our concerns. Almost immediately we received an apologetic call from a friendly non-physician administrator. Then there was a two-week delay, and a legal-sounding letter denying any wrongdoing followed. Curiously they thanked us for pointing out the outdated phototherapy equipment (and assured us these were being replaced anyway). Lastly, the pediatrics chairman called to reiterate how everything had “followed protocol” and ended our impassioned discussion with “we’ll have to agree to disagree.”

Although my daughter suffered no permanent harm, what unfolded was a potentially lethal mix of medical errors that led to a preventable NICU stay. After this episode, I now have grave concerns about families without formal medical education or poor health literacy. Furthermore, my opinion after working across ten hospitals in five states is that — staff are universally overworked, not supported in terms of appropriate backup and sometimes are undertrained. Finally, it seems that proper systems to report errors are sorely lacking. It is a sad and destructive cycle.

https://www.kevinmd.com/blog/2018/05/how-i-saved-my-daughter-from-a-medical-error.html