Friday, December 18, 2015

204. Holoprosencephaly

One mouth, stomach, liver, spleen, pancreas, bladder, bowels.  One heart.
Two eyes, ears, lungs, hands, kidneys, ovaries

And one brain, or more specifically, one hind ("primitive") brain, one midbrain, and one initial forebrain, which is destined to develop into functionally separate but still communicating half-brains.

With holoprosencephaly, the forebrain never divides.  There are associated severe facial deformities. Most never make it to term, and if they survive labor, rarely live more than a few hours, though there are scattered reports of some with almost normal mental and intellectual capacity.

Easy to recognize on ultrasound, Elizabeth knew early on that her first baby had a single forebrain.  She declined to end the pregnancy and made it to term, with neonatal death at four hours.  Today she sees me to remove an IUD that was placed about a month after delivery a year ago. She is ready to try again--not an easy decision even though she knows that holoprosencephaly is not genetic--no increased risk of it happening again.

She is in tears as she describes her decision to again conceive.  One factor is the horrible lack of sensitivity demonstrated by her all male co-workers at her engineering firm, manifest by comments made during and after pregnancy.  She did not offer, nor did I ask for examples, but I can image her being asked why she didn't abort early on, or that wasn't it better that he died so soon after birth. Or who knows what.

She like her job; "I made good money."  But she just can't continue to work with these men, and her job is so specialized she couldn't find similar work in the same geographic area. so better leave her career behind her and become a stay at home mom. She never mentioned her husband, so I don't know whether he's part of the problem, part of the solution, or somewhere in between.


1 comment:

  1. One of my close friends just lost her almost-four-month old baby boy, who lived his entire life in the NICU and who faced so many physical challenges in his short life. I cringed at some of the comments I heard from sweet, well-intentioned friends, so I can only imagine what could be said when even less thought is put into one's remarks.

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