An anencephaly diagnosis of one of Christina and Shawn Byrum’s twins robbed them of a joyous parental experience. Eli and Christopher Byrum were born on April 25, 2015. Christopher’s life was short-lived.
“Anencephaly is a developmental abnormality when a baby is born without parts of the brain and skull,” said Dr. Howard Popkin, an obstetrics and gynecology specialist from Bay Women’s Health in Glen Burnie, Maryland.
Christopher survived just 90 minutes outside of the womb.
Christina said that after Christopher’s passing, the doctor nodded to signal her to prepare his siblings for his departure from the room for special surgery.
She added, “It was a moment we had dreaded since receiving his diagnosis, but in that moment, peace that surpasses all understanding blanketed the room. It was literally a supernatural feeling that only could have come from the Divine.”
The Byrums previously enrolled in two programs to enable Christopher’s life to be celebrated by utilizing educational research options through Duke University and Infinite Legacy. Prior to January 1, 2023, Infinite Legacy was named The Living Legacy Foundation of Maryland. The nonprofit organization facilitates organ, eye and tissue donation in the state of Maryland, D.C., and Virginia.
Christina explained that mid-pregnancy, a perinatal hospice specialist at Johns Hopkins Hospital and members from Infinite Legacy helped with enrollment in the anencephaly research study at Duke University.
Christina added, “Infinite Legacy played an important role in us being able to complete the requirements for the Duke study.”
The study required completion of medical family history and blood samples from the twin’s parents and the twins cord blood at birth. Since Shawn was not a patient, Christina’s nurses could not draw his blood.
“Karen Kennedy, a registered nurse who works at Infinite Legacy, graciously stepped in and drew my husband’s blood, packaged all samples for transport and made sure those samples reached their destination on time,” Christina said.
Photo courtesy of Sarah Michelle Photography
Kennedy, vice president of external affairs and education, explained that the nonprofit works with donors of all ages and their families. This can sometimes include neonatal and infant patients.
When working with infant patients there is a special set of supplies and equipment utilized during these types of donations. These supplies and equipment aid “in the speed and efficiency of the infant liver procurement process and were fondly referred to as Christopher’s Pack,” per information provided by Infinite Legacy.
“While it is tragic to lose a child, that child may be able to give the gift of life to another child waiting for a lifesaving organ transplant. While Christopher was unfortunately too small to donate his organs, our staff gained valuable insight into developing and refining the processes and equipment needed to facilitate the gift for patients of this age in the future,” Kennedy said.
Kennedy also explained that opportunities for neonatal organ and tissue donations are extremely rare.
“Christina was presented with the opportunity to have Christopher undergo a research recovery procedure that would assist our organization in learning more about recovering organs from small neonatal donors,” Kennedy said.
She added that Christopher’s donation allowed both the clinical recovery and family services teams at Infinite Legacy to learn a great deal about the necessary processes and procedures to make this type of donation happen, as well as how to approach families in difficult times such as this.
The Byrum family has supported Infinite Legacy in several ways. In 2017, they hosted an organ donation awareness booth at the Ocean City Convention Center. Then, in 2019, they hosted an organ donor awareness seminar for local homeschoolers at the Glen Burnie Library.
Other acts of volunteerism include distributing Donate Life brochures along with cards sharing Christopher’s story. The baby’s uncle, David Adkins, became involved with Organ Donation through his nephew’s journey.
“In the past five years, he tirelessly transported numerous organs with teams of transplant doctors for Nationwide Organ Recovery-Transport Alliance (NORA), according to Christina.
Christina further noted, “Participating in the Duke anencephaly study helped keep focus that something good was able to occupy a very distressing time.”
Kennedy stated that “Infinite Legacy is touched and humbled by the Byrum family’s generous gift.”
She added, “Get the facts about organ, eye and tissue donation and register your decision to be a donor at www.donatelifemaryland.org or in your iPhone health app, or the next time you visit the MVA to renew your license.”
Donate Life Maryland is the nonprofit organization managing the Maryland Donor Registry.