Two babies, two rattles, one heart. The complicated decision to separate conjoined twins when only one will survive

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by Nora Valdez. Used by Permission.

Oscar J. Benavidez, MD, the MGH pediatric cardiologist  involved in a difficult separation of conjoined twin girls, remembers a painful moment on the day of surgery. When the joined babies were rolled into the OR, each was holding a rattle.

He and the others knew: only one of them would leave the operating room alive. And even that wasn’t certain.

Benavidez and two others recalled the case at a Tuesday gathering of members of the Association of Health Care Journalists. It was a case the described rather clinically in an article behind the paywall in  The New England Journal of Medicine  and more conversationally in STAT. The Globe’s sister health site hosted the event in their new downtown offices.

The twins had separate brains, lung and hearts, but only one heart was functioning.

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Ethicist Brian M. Cummings, MD,  was also at the event  along with pediatric surgeon Allan M. Goldstein. In Cummings’ contribution to the NEJM article, he noted  “In this case, to do nothing would most likely result in the death of both girls but to intervene could save only one child. Can observation of both of their deaths be defended? Can an interventional killing be rationalized?”

The decision was left to the parents, a couple from rural Africa.  Their voices, in English, come in at the  end of the NEJM article. Life for them had been “very unpleasant. Conjoined twins are not seen frequently, and because of the stigma associated with this condition, it was very difficult to seek treatment or even just to go out in public.”

They agreed to the surgery and, as expected, one twin survived.

Writing in Stat — The Boston Globe’s sister health news site  — Cummings described how he felt after the surgery.

“…Twin B arrived in the intensive care unit. I felt a profound mixture of relief and sadness, suddenly feeling the burden of facilitating this emotional process. Even though it had become clear what we needed to do, it had been harder than I thought. I had only a few moments to say my own goodbye to Twin A and I could not hold back my tears. I wasn’t alone.”

 

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