Bound by Love: A Mother's Struggle, a Heartbreaking Choice, and the Separation of Conjoined Twins
During my first-year practicing as an attending neonatologist, my NICU work life was beginning to seem routine, until I was confronted with caring for a set of conjoined twins transferred into our unit from Mexico City. This early in my career, I had no understanding of that condition, and in fact, I had never seen Siamese twins, as they are often called. As these baby girls rolled into the NICU, I looked at my elder co-attending sheepishly as if to say, “Help.” He looked at me, grinned, and replied, “I already passed this test. It’s your turn.” So, I took a deep breath, grabbed a neonatal nurse practitioner (NNP) for help, and we proceeded to assess the twins.
I found out later that the incidence of conjoined twins is estimated to be approximately 1 in 50,000 to 200,000 live births. The condition is rare, and about 40 to 60% of conjoined twins are stillborn. Of those born alive, about 35% survive for only one day. Overall, the survival rate for conjoined twins is around 5 to 25%. Treatment and prognosis for conjoined twins varies widely depending on where they are joined, and which organs are shared. Some conjoined twins can be surgically separated, especially if they do not share critical organs. The success of separation surgery depends on the location and extent of the connection and the overall health of the twins.
I encountered these baby girls - my new patients – resting on their sides together in one bed, facing each other, fused throughout their entire abdomen. (This is called omphalopagus conjoined twins.) It was astonishing to see them lying there: two heads pointed upward and each baby with her arms wrapped around her sister. Four legs and feet pointed downward. Each girl was connected to her own set of lines and tubes, each one on her own ventilator, and all of this made for quite a tangle.
We discovered that one twin had severe, inoperable congenital heart disease. She was critically unstable and was expected to die soon. Her blood pressure was low, and her single kidney was failing. Her sister had a normal heart, had most of the liver that her sister shared, and one kidney that seemed structurally sound by ultrasound.
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