Be Sure to Ask the Right Question

Megan Nix’s article discussing benevolent deception on KevinMD, is well done, thoughtful, and raises a number of important questions, some of them unasked. Sometimes the right question is really hard to ferret out in a bevy of information.

In her article, Megan states right up front that when she was 36 weeks pregnant, her obstetrician told her that her baby had a disproportionately small head, called microcephaly. She says nothing else about whether her doctor followed up in trying to find the cause for her baby’s microcephaly.

The important issue here is that microcephaly should never to be take lightly, even though sometimes it is nothing more than hereditary or the shape of baby’s head. Sometimes it is associated with ventriculomegaly (brain cisterns of fluid larger than usual). Since microcephaly is associated with many conditions, it requires a long and thoughtful discussion with the patient. Certainly, a referral to a geneticist or maternal-fetal medicine specialist is an important option. Ignoring microcephaly is not an option. Megan doesn’t tell us whether or not there was any follow up on the discovery of her baby’s microcephaly.

The rest of Megan’s story provides an in-depth study of the cytomegalovirus (CMV) and how her infection played out in her pregnancy. Megan asks why there was no attempt to explain to her the common situations in which pregnant women can pick up viruses which might cause problems in pregnancy.

…there’s a term for this well-intentioned omission of information. “Benevolent deception” describes the silence I was facing with CMV: ACOG—and many OBs I have since interviewed personally—believe that worrying people of childbearing age about CMV will affect them too negatively for them to know the truth.

She was disturbed to discover that the American College of Obstetricians and Gynecologists (ACOG) recommends against discussing CMV with pregnant women.

Such guidelines [i.e. avoiding your toddler’s saliva] may be difficult to implement because they often are considered impractical or burdensome. At present, such patient instruction remains unproven as a method to reduce the risk of congenital CMV infection.

As you may read on the pages of ACOG or the CDC, CMV is a ubiquitous, double-stranded DNA herpes virus transmitted by contact with infected blood, urine, or saliva and has an incubation period of 28 to 60 days. The infection can be primary or secondary and is often asymptomatic. Both ACOG and the CDC believe CMV is very common and the infection often has no effect on the mother or baby.  As Megan notes, this kind of withholding information is sometimes referred to as “benevolent deception.” It should be noted, however, that the American Medical Association (AMA) considers “benevolent deception” a violation of a patient’s right to informed consent.

Because CMV is so common in children, I believe Megan was right in thinking she should have been given suggestions for how to protect herself, especially from toddlers who may be in daycare. The suggestions she would have been given to protect herself were little more than the usual suggestions for how to protect yourself from infection. Any pregnant woman is likely practicing those recommendations in the first place. Wash your hands after changing a diaper. Wash your hands after wiping your toddler’s nose. The only two recommendations which might not be normal routine would hardly introduce a hardship to a pregnant woman—if her doctor had discussed preventing infection with the patient. CMV is spread through saliva, so one suggestion is to avoid kissing your toddler on the lips.  Another suggestion is to avoid the very human urge to finish up the food on your toddler’s plate.

No discussion of CMV is recommended by ACOG and the CDC because the virus is ubiquitous (all over) and there are varying degrees of infection, usually with no overt signs of illness, and the tests for CMV are unreliable. Megan believes, based upon her experience, that ACOG should recommend routine discussion of CMV and testing.

Although ACOG and CDC conclude that avoiding CMV during pregnancy would be unduly burdensome for the pregnant patient, Megan says this isn’t so, and I tend to agree with her. The precautions on avoiding infection are little more than what mothers would do in any pregnancy. Those recommendations are not overly burdensome.

However, the issue of her baby’s microcephaly is another issue. The microcephaly could well be unrelated to the CMV virus. I believe the reason for microencephaly may well have had nothing to do with her baby’s CMV, but should have been followed up by her doctor.  

Even if CMV is diagnosed, the treatment is not 100 percent effective and offers some risk. In this case, what would have saved Megan some distress, would have been diagnosis and management of her baby’s microcephaly. ACOG does recommend diagnosing the reason for the microcephaly. Diagnosis would have included amniocentesis and also, in the process of investigating reasons for the microencephaly, which would have indicated the CMV infection.

With Megan and her baby, the microcephaly, not routine CMV screening, should have triggered a work up which should have turned up the CMV. Since CMV is common in toddlers, and since CMV is the greatest cause of stillbirth, I believe a discussion of CMV is warranted even though routine screening for CMV is not.

Megan’s concerns about benevolent deception are warranted, but to me, the important question in Megan’s story is why her baby’s microencephaly was apparently left unexplored.

Sometimes the best solution to a problem can be foound in asking the right questions.