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The author relished the role of family medical authority--until her infant niece was hospitalized.
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The author relished the role of family medical authorityuntil her infant niece was hospitalized.
My background always surprises people. I worked as a nurse and earned a law degree before becoming a doctor in the mid-1990s. By that time I was fairly certain, given my age and experience, that I could handle just about anything. What I hadn't counted on was having to face the limits of my knowledge so quickly and in such a painful and personal way.
My brother's second daughter, Ariel, entered the world during my residency. She was pink and squalling, and passed her first physical with flying colors. It wasn't long, however, before I received the first of many awful phone calls. "The little one is in the hospital," my mother said, the panic evident in her voice. I frantically began searching my mind for something reassuring to say.
Up until that moment, I had enjoyed the role of "doctor in the family." I was the one who speculated about the cause of Uncle Frank's liver ailment, offered opinions about new drugs and treatments, and was introduced to my dad's office mates as Dr. Green. Now, I was being called on to explain Ariel's baffling "failure to thrive."
As far as the hospital staff was concerned, however, the answer was clear: bad parenting. Frustrated and angry, my brother took his daughter home against medical advice. That was the first of many decisions that, in hindsight, we all regret.
For a time, things seemed to improve. Ariel's new pediatrician gave her a clean bill of health. She cooed and gurgled, began gaining weight, and basked in her family's love.
Then another frantic phone call. My sister-in-law had found Ariel in respiratory distress and rushed her to the hospital. The baby was diagnosed with pneumonia and transferred to another hospitalwhere she was diagnosed with meningitis. She was monitored, and discharged when her CSF came back negativedespite a confusing array of abnormalities that included anemia, hypoxia, and hyperkalemia. Why, I wondered, hadn't Ariel been worked up further?
Next, the seizures started. Once again, the family turned to me for explanations and reassurance. I tried to sound confident and unconcerned, but I knew that something was terribly wrong. I was furious at myself for not being able to figure out what it was.
The downward spiral continued. Ariel, now diagnosed with epilepsy, was given Dilantin to control her seizures. The entire family learned infant CPR, and Ariel slept connected to a monitor. One afternoon, the alarms sounded. By the time Ariel was resuscitated in the local ED, she had suffered severe anoxia.
When I arrived in the pediatric ICU, Ariel was on full life support. Her parents and I made the painful decision to turn off the pressors and disconnect the ventilator. My sister-in-law held her one last time before she died. Then I called my parents. It was the first time I heard my dad cry.
The phone was ringing as I entered my parents' house. It was the county coroner. He suspected my sister-in-law of Munchausen syndrome by proxyin effect, of murdering her babyand demanded to speak with her. The lawyer in me came out with a vengeance. "I'm sorry," I said. "We're in mourning. I'm the only one in this house you can speak with, and this is not a convenient time." Then I hung up.
In our house filled with sorrow and tears, I fielded the coroner's subsequent calls. We soon discovered that investigators were interviewing neighbors, doctors, and hospital staff. As the inquest widened, I advised my brother to consult a criminal attorney. The local sheriff, armed with a search warrant, broke the lock on my brother's house and confiscated the heart monitor that had recorded Ariel's last moments.
Although the baby's autopsy and X-rays revealed no broken bones, and indicated that she had several heart abnormalities, we lived in fear that child welfare authoritiessuspecting abusewould remove my brother's older daughter from his home.
Finally, Ariel's death certificate arrived. The verdict: SIDS. There were no more calls or questions, but neither did we receive a word of explanation or an apology for weeks of torment.
Ariel's pictures and booties have long been tucked away. But the lessons learned during her short life will never fade.
Foremost among these lessons is the terrible damage that unfounded accusations can cause. Granted, hospital personnel must be alert to child abuse. Surely, however, they need to be more careful about hurling devastating accusations without confirmation or proof. "Failure to thrive" doesn't always indicate parental neglect. Worse, this catchall diagnosis often truncates the search for what might be a treatable physical problem.
Indeed, if someone in that first hospital had explored alternative causes of "failure to thrive"or had done an echocardiogram (the standard of care when a baby is reported cyanotic or apneic)Ariel might still be alive.
In the years since Ariel's death, I have also gained a new understanding of my role as medical "expert"with patients and family members. I'm more mindful of my own limitations, and the limitations of modern medicine.
For a time, I was sure that if I had been smarter, or better read, or more attentive, Ariel would have survived. Finally, I stopped berating myself and decided, instead, to take what I could from this devastating experience.
Now I ask for help when I'm stuck; I tell patients, "I don't know, but I'll find out." I try to see events through the patient's eyes, and keep my own biases contained. This is the physician and the person my niece has helped me become.
Patrice Green. Ariel helped me become a better doctor.