You may have heard of the celebrated case of Carl and Clarence Aguirre, Filipino twins conjoined at the top of their heads (craniopagus). This condition is so rare it happens once in 10 million births and there are no more than 60 who have undergone separation surgery. In the past they were separated in a single operation that often resulted in serious neurological setbacks for at least one of the children. The procedure is now done in multiple stages and was developed by surgeons at Montefiore Hospital in New York City.
Carl and Clarence had the surgery in 2003 and did pretty well; the success of the procedure was touted on Montefiore’s website as “the first ever separation of craniopagus twins where both twins survived with no neurological damage or deficit incurred from the surgery.” It generated headlines all over the world, and the surgeons were hailed as miracle doctors. The mother repeatedly expressed her gratitude for the medical care, attention and support she received.
Now four years, later Mrs. Aguirre is still in United States without her family, because the boys need more surgery. The Aguirre’s have been supported by the generosity of many Americans; Montefiore Hospital alone has provided multi-millions and is still providing medications and supplies. The townspeople where they live have provided them with food, non-profits have provided a home, and lawyers have set up trust funds and are dealing with their expiring visitors visas.
The boys are still in diapers at five years old; Carl can speak a few words but they are often unintelligible, and because of his impaired left side he crawls dragging his limp left limbs. Clarence can walk and talk although his speech is somewhat garbled. Neither boy eats well, so they are fed through feeding tubes at night.
The boys will require more surgery to close the holes in their heads; Mrs. Aguirre is anxious, depressed and has ulcers. Nobody planned for such a long haul, it is not the happy ending everyone hoped for and was led to believe.
There is a price for medical miracles; we can separate conjoined twins, even revive the dead, but it comes with a high price, physically, financially and emotionally. If we continue on the road to medical miracles, we can’t just do the miraculous interventions without also providing for long term care, because not all medical miracles have fairytale endings.