When a Twin Dies

Organ Donation: A Twin-Based Perspective

Monozygotic co-twins are ideal organ donors for one another due to their genetic identity. In fact, the first successful kidney transplant took place between identical twins, Ronald and Richard Herrick, in 1954. The present report approaches this topic differently--it considers the perspective of an MZ twin who donated her deceased twin sister's organs following her sister's untimely death from a brain hemorrhage at age thirty-five.

MZ twins, Shelby and Shannon Miller, were born thirty-seven years ago to Donald and Paula Miller of Castaway Cove, Florida. Photographs of the twins, displayed in show their striking physical similarity, often considered a hallmark of identical twinship. The sisters, always close, attended college together, co-created two companies and developed a fashion line called Shannon Britt shoes.

Both twins were prone to migraine headaches, but brain scans revealed no physical abnormalities in either one. Several European and Australian twin studies have found genetic influence on migraine, although two American studies failed to find this effect (see Ziegler, Hur, Bouchard, Hassanein and Barter, 1998 for a review). A subsequent study by Ziegler et al. (1998), using reared together female twins from Kansas and reared apart female twins from the Minnesota Study of Twins Reared Apart (MISTRA), estimated that 50% of the variance in migraine susceptibility could be explained by genetic factors, with non-shared environmental events plus measurement error explaining the rest. It is also worth noting that the well-known "Jim twins" who launched the MISTRA in 1979 both suffered from a similar mixed headache syndrome from an early age (Segal, in press).

Shannon delivered her second child on August 5, 2009 with no complications. However, one week later she developed a severe migraine headache that did not respond to her usual medication. Shelby brought her sister to the hospital at which time she showed an unusually high blood pressure reading for no apparent reason. One hour and a half later Shannon began having seizures, became paralyzed on her left side and grew unconscious. She passed away from massive bleeding of the brain. Shelby immediately requested that the organ transplant team be contacted.
Organ donation was familiar to these twins having had an uncle who lived for eleven years following a heart transplant. Aside from her migraines, Shannon was young and very healthy so was able to donate all of her major organs, in addition to bone marrow and skin. It is believed that she saved or improved the lives of hundreds of people. Shelby and her family have met the man who received her sister's heart, and it was gratifying. "That was such an amazing moment, to hear her heart again giving life. I was so proud to be her twin."

In the process of arranging the organ donation, Shelby learned that there was professional little attention to twins, in the sense that available information and support applied mostly to parents, children and non-twin siblings donating organs to each other. There was virtually nothing concerning surviving twins donating their co-twin's organs to unrelated individuals; staff at Shelby's local organization indicated that they were unaware of such an occurrence. Shelby provided them with information about twins and her contact number and one week later learned that a second twin had just made the same decision as she. Whether or not other such cases exist is uncertain; Internet searches I conducted did not identify cases like Shelby's.

In July 2011, the Miller family was honored by the National Organ Donation Ceremonies, in Washington, D.C. However, a twin-based approach to organ donation from the perspective of the surviving twin is still absent. "Going to local organ donation meetings I found a void in twin recognition . . I am in the process of trying to get it acknowledged." Shelby's comment should be taken seriously given my experience as director of an ongoing adult twin loss study and expert witness in court cases involving the wrongful death of a twin. Specifically, surviving twins often engage in activities designed to keep their deceased co-twin's memory alive, including writing a book, establishing a foundation and/or speaking publically. Organ donation, while limited to young, healthy individuals, is an option that Shelby hopes to make more widely known to surviving twins and their families.

NOTE: This article will appear in a forthcoming issue of TWIN RESEARCH AND HUMAN GENETICS and will include photos of the twins.