It was about 30 years ago, at the beginning of what came to be called “fetal medicine,” that I first met Mrs Peterson. She was early in her fifth pregnancy and had written to the referral hospital where I worked, recounting a history of progressively severe rhesus isoimmunisation with her last two pregnancies, resulting in fetal deaths at mid-gestation. Having read about the new techniques of amniotic fluid analysis and direct fetal transfusion, she wondered if they could help her. The very detailed and specific information she provided (which I would come to learn was one of Mrs Peterson’s essential characteristics) indicated that the only hope lay with fetal transfusion.
We carried on a dialogue by letter and telephone, consisting mainly of Mrs Peterson asking question after question about the condition, all phrased carefully and precisely and written in her neat hand. She would soon be 42 years old and amniocentesis for fetal karyotyping had just begun, so I raised the additional possibility of this test. After several rounds of questions and answers, Mrs Peterson decided she wanted it done.
Thus it was that we first met face to face when she came in for the genetic amniocentesis at 15 weeks’ gestation. After a brief exchange of pleasantries, I began preparations for the procedure. While painting the abdomen with antiseptic, I remarked casually, “I’m certain we talked about this, but if we were to find that this baby has a serious chromosomal abnormality, then I assume you would wish to have the pregnancy terminated.” “No,” she replied as I was pulling on my gloves, “but I want it done anyway.” I explained that there was no treatment for conditions such as trisomy 21 or 18, and that the only thing to do in such cases, if anything is to be done at all, is to abort the pregnancy. Performing amniocentesis but not abortion if it turned out positive would be, I added as I took off my gloves, “a waste of your money and my time.” “While I wouldn’t have an abortion under any circumstance,” she countered patiently, “if it did turn out that this baby is abnormal, then I probably wouldn’t go through all the procedures—repeated amniocentesis, fetal transfusions, early delivery—we’ve talked about.”
She was, of course, absolutely correct. She had thought it through in ways much more rational and profound than I had. My own thinking, by contrast, had been simplistic and superficial.
The story had a happy ending. The baby was normal chromosomally. Severely erythroblastotic, she had three or four fetal intraperitoneal transfusions and was born after induced labour six weeks or so before term. But she did very well after birth and, for many years thereafter, on the girl’s birthday Mrs Peterson wrote me a long and detailed letter describing her progress.
The lesson I learnt from Mrs Peterson is that sometimes patients have thought about things more clearly and deeply and meaningfully than we have. I try always to remember this in my dealings with patients and, in a professional lifetime spent in academic medicine, I have incorporated it into my teaching. Osler supposedly said, “Listen to the patient. He is telling you the diagnosis.” To which I would add, “And she just might be telling you the best management, too.”
Footnotes
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