Everyday Life Narratives

Your favorite doctor is on TV…

As I hear my husband yell this from the living room, my first thought is, This can’t be anything good; what has he done?  By the time I arrive in front of the television, another competing thought wins out and I expect to see Abraham Verghese discussing a new (we can only hope) novel.

Ahhh…sarcasm.  The doctor I actually see on the screen is my son’s first pediatrician.  Hatred is a base response, but I am surprised at how much affect seeing her face and hearing her voice could have after thirteen years with more than 1,000 miles between us.  Equally surprising is how visceral my reaction is.  I can feel my face burn, my stomach churn, and my fists tighten.  In my mind, I relived the fifteen months I spent in her practice and the day that I just collected my son, all of his things, and walked out the door of the exam room at the start of a visit without a single word.  There was nothing left to be said when I finally reached the end.  It should have come sooner.  It should have come much sooner.

Everyone told me what a great doctor she was.  Hospital nurses gushed over her.  Other doctors in the practice did the same.  Other parents in the waiting room sang her praises.  Aunts told me I was being “too fussy” when I raised concerns.  In fact, they all had me doubting my parenting skills as opposed to doubting her doctoring skills. 

I was a first time mother, but I wasn’t that young and I certainly wasn’t inexperienced.  I had been around children and babies my whole life.  I had taken care of multiple children on my own during summers in college.  I was 27 by the time I became a mother.  My son was born premature due to preeclampsia and was barely 4 pounds when we bought him home with a long list of meds and an apnea monitor.  Who wouldn’t have been a bit unnerved by those details?  Within days, he was losing weight and projectile vomiting.  In all fairness, the pediatrician did take my initial claim seriously and ordered an endoscopy.  The results were normal, but I knew my son’s symptoms were not normal.  Unfortunately, no one other than my husband and I ever witnessed these symptoms.  Within 10 days of bringing him home from the hospital, we had my son at the ER three times for bradycardia episodes and vomiting that I knew was beyond the norm.  I was a nervous first time mother, but my concerns were real and I knew it.  I just couldn’t get anyone to listen to me. 

Babies spit up.

If one more person told me this, I was going to lose my mind.  By the time my son was 14 days out of the NICU, I was being threatened by the pediatrician.  She shook her finger in my face and told me my son was going to be a “failure to thrive” statistic if I didn’t figure out how to be a mother.  She ordered a home nurse to come to our house to observe me with my son to “evaluate” areas in which I needed parenting education.  The nurse rarely spoke except to tell me day by day how much weight my son was losing and how dangerous it was at his age and size.  Invariably, her visits would not coincide with his startling symptoms.  Hour after hour, day after day, and eventually week after week, I never went to bed and stopped putting my son to bed.  I dozed off and on sitting upright in a chair in our bedroom with my son lying against one hand and a bulb syringe in the other.  It had saved him from choking on multiple occasions already and I never kept it out of reach.

This isn’t normal.  I know this isn’t normal.

More than a month later, he projectile vomited on an ER doc who immediately insisted he be scoped again.  This time, we had a diagnosis of pyloric stenosis (a blockage at the exit of the stomach) and surgery was scheduled for a few hours later. 

Even though I had proved my instincts were right, my relationship with the pediatrician did not really improve.  At nine months old, we saw another doctor in the practice when she was unavailable.  This doctor diagnosed my son with cerebral palsy the first time she ever saw him in a visit that lasted less than five minutes.  When I raised this issue with our own pediatrician the following week, she said the chart said the doctor had witnessed my son “scissoring his legs” during the exam.  I insisted that he had never done this before or since and asked her to check him for herself.  She told me I was in denial and that she trusted her colleague.  His physical therapist and future pediatrician both confirmed that he did not have cerebral palsy.  However, it took me another 8 years to clear up the cerebral palsy misdiagnosis.  Because it was in his file, I could not get life insurance for my son until a neurologist wrote a detailed account of his condition to challenge a refusal of coverage.

Still, I didn’t leave the practice.  I should have left after the pyloric stenosis diagnosis.  I should have left after the cerebral palsy misdiagnosis.  I didn’t leave.  I convinced myself that everyone who thought she was a fabulous doctor had to be right.  I told myself that in his condition, continuity of care was more important than my “liking” the pediatrician.

I begged for a referral to another pediatric gastroenterologist.  We had a philosophical difference, and my husband and I refused to administer the prescriptions given to my son by the specialist.  There were many other issues with the specialist, and I was desperate to replace him even if I was going to stick it out with the pediatrician against my better judgment.  Every single week, I begged for a suggestion for another gastroenterologist.  I even offered to travel as far as Orlando.  Surely there was another specialist there in a city that large that could treat my son.  Week after week, I was told that there were no other specialists around that could treat my son’s conditions.  Finally, after many phone calls and much research on my own, I found another pediatric gastroenterologist less than half an hour from my home.  On my next visit with the pediatrician, I told her we had changed specialists and asked her to communicate with the new specialist’s office about my son’s care.  She asked me who we were seeing, and I just couldn’t believe the next words that came out of her mouth.

You will love her.  I went to medical school with Michelle, and SHE IS WHO I TAKE MY OWN CHILD TO.

In that instance, everything I had put up with from this doctor hit me hard.  I had no words.  I just took my son off the exam table, collected my things, and walked out of that room, that office, and that practice forever.  When I realized that she didn’t think my son needed access to the same quality care she sought for her own child, there was nothing left to say and there was no other alternative.  In retrospect, I should have trusted my instincts from the beginning.  Through this process, I learned how to tell the difference between a disagreement with a physician that is of consequence and one that is not.  The latter is much more common, thankfully. 

So, why does seeing her face and hearing her voice still prompt such a strong reaction after so much time has passed?  As I watch her on the screen, describing an unusual case in which she diagnosed a school-aged boy with a rare parasitic infection, I feel as if no time at all had passed.

I am filled with rage, but outwardly laugh as my husband says,

At least she got something right…