Death of a Child

One of our patients died unexpectedly last week, something that emotionally devastated our team and many of the other residents who had taken care of her. She was a five year old previously healthy girl, going to school, playing with friends, enjoying childhood when she had a catastrophic seizure four months ago. A work-up revealed that she had a stroke from a giant arterio-venous malformation (AVM) in her brain. Unlike adults, strokes in children often present with seizures, altered mental status, or coma. Though they are rare, causes include structural defects like AVMs and problems with coagulation like sickle cell anemia.

This patient was brought into the operating room where neurosurgery did a craniotomy, removing part of her skull to evacuate the blood. Unfortunately, the AVM was in an inoperable location and they were unable to clip it. Interventional radiology was also unable to put coils in it. Thus, the AVM could not be repaired and there was a significant risk of rebleeding. The patient was stabilized in the pedatric intensive care unit over several weeks.

Eventually she was transferred to the rehabilitation service. Over the course of three months, she regained the ability to walk, talk, and interact with people. Every morning, we would round on her, mostly to pay a social visit; she was adorable and we were incredibly pleased to see that despite this life-threatening episode, she was getting closer and closer to her baseline function. We planned to replace the skull flap from the craniotomy followed by radiation (gamma knife) as a way to reduce the AVM. Though we understood that her underlying structural defect had not been repaired, in our minds, she was a healthy child who had recovered remarkably.

Last weekend, overnight, she woke up with severe eye pain. The resident immediately went to evaluate her and consulted neurology and neurosurgery. Though initially her mental status was normal, over an hour, she slowly became obtunded and then nonresponsive. A decision was made to control her airway, and she was sent down to the CT scanner. Her AVM had rebled. The AVM, which had been precarious but stable for 4 months, had burst open. The neurosurgeons took her into the operating room but found that her brain was filled with blood. They could not stop the bleeding. Instead of letting her die on the table, they closed her up and brought her back to the pediatric intensive care unit. The following morning, her parents elected to withdraw life support.

I felt ambivalent about writing this. This is the second child I've seen die this year. It's tragic and it's frightening and it's serious, but those aren't necessarily reasons to blog. I think writing about this allows me to find closure to some extent. Coping is very difficult, especially in this patient who seemed to be doing so well, who we were so optimistic about.

For me, I was affected mostly by how emotionally wrenching this was. But for some of the residents, this sadness was compounded by guilt - could we have diagnosed this earlier? Could we have intervened? The chief residents held a debriefing session to discuss what happened. There was nothing that could be done; the AVM had such a brisk, voluminous bleed that no intervention would have saved her. Sending her to the CT scanner earlier would probably have lead to a worse outcome - having to code her in the scanner. All the right parties, neurology and neurosurgery, were involved and they did what they could. We were helpless to change this course of events.

My deepest sympathies to the patient, family, friends, house staff, and all those involved in this patient's care.