Badly-designed EHR forces mother to decide on sick child's gender
This story, related by a pediatric specialist, exemplifies the gap between the expertise and thinking of non-healthcare-experienced computing personnel and healthcare informatics specialists:
‘Mother referred for delivery and management of a fetus in utero with diagnosis of hypoplastic left heart – baby born, middle of night, terribly sick, unexpectedly more wrong than expected, and with truly ambiguous genitalia. Can’t get an xray, prostaglandin-E (a lifesaving medication used in babies born with functionally absent, or obstructed, blood flow out of the heart), or any medical test, until there is a “Medical Record Number” in the computer. Can’t get one of those until we tell the computer whether the baby is a boy or a girl. And there is no way to bypass that and get on with delivering emergency care. (Unimaginable - ed.)
Not the way one wants to break the news of an intersex (gender not definite) problem to a new young mom, of a very sick baby…. So I ran back to Labor & Delivery, sat down face to face with the mom, still groggy from meds and caesarian section surgery – and said something like, “Your baby is very sick, and we don’t know precisely why. And we can’t tell for sure right now whether your baby is a boy or a girl. In order to get x-rays and medications, we need to tell our computer whether your baby is a boy or a girl. Which do you want the baby to be?
The 18 year old new mom looked me right in the eye, nodded her understanding, and said, “I want a girl.” So I said, “OK, she’s a girl. I’ll come back and talk to you as soon as we get her stabilized.”’
Postscript: We did get her stabilized, and she was a genetic girl, but she died waiting for a heart transplant that never came. And that mom spend nearly every waking minute with the baby for the whole 3 months we all waited for the heart transplant that never came. Truly an amazing person, that mother. All children should be so lucky.
Never since have I ever
designed a database with gender as a binary part of the primary key. Out in the business world, people are still
doing that. And I’m sure some of those people are still trying to sell their
business stuff to healthcare. Babies aren’t the only ones who might need a
bypass (intersex is actually quite common), and
consider the roadside bomb victims in
(My response is that anyone with even a modest amount of pediatrics knowledge knows that gender can be one of “M”, “F”, or “unknown.” Apparently, the designers of the system did not envision such knowledge as important for informing system design. How such an oversight occurred is hard to fathom, because this type of outcome was entirely predictable. - ed.)