Christina Byrum and Shawn Byrum were a couple who were happily expecting twins. However, November 28, 2014 their happiness shattered. It marked a time when the Byrums were introduced to a serious birth defect called anencephaly.
“A routine sonogram revealed that twin A (Christopher) showed signs of acrania /anencephaly,” Christina said.
“Anencephaly is a developmental abnormality when a baby is born without parts of the brain and skull. This condition usually happens at six weeks of pregnancy. Anencephaly occurs in 1 out of 1,000 pregnancies and affects 1 in 5,000 births,” said Dr. Howard Popkin, an obstetrics and gynecology specialist who works at Bay Women’s Health in Glen Burnie, Maryland.
Popkin also noted that the majority of babies born with this condition are either miscarried or stillborn. If they are born alive, the child’s survival is typically only hours or days. Christina’s case involved one fetus that was completely normal. The other suffered from anencephaly.
Popkin added, “The condition can be picked up with Alpha-fetoprotein testing in the early second trimester, or by sonogram. If the child is born alive, comfort measures are appropriate.”
Photo courtesy of Sarah Michelle Photography
By December 9, 2014, the expectant mother was sent to John Hopkins Multiple Pregnancy Management Clinic. There, she began the journey of monitoring the high-risk pregnancy.
Christina’s medical team included: Dr. Howard Popkin and Dr. Dennis Stern, two of the partners at Bay Women’s Health; Dr. Chuka Jenkins, maternal fetal medicine specialist at MedStar Harbor Hospital and Dr. Ahmet Baschat, Director of the Center for Fetal Therapy at John Hopkins Fetal Therapy Center.
“Dr. Baschat informed us of the potential occurrence of Twin-to-Twin Transfusion Syndrome , due to the twins sharing a placenta. He warned us that—if Christopher were to pass in utero—it would most likely result in death or brain damage for Eli,” Christina recalled.
A pivotal moment occurred when the parents learned their twin boys, Christopher and Eli, needed to be delivered at 34 weeks due to weekly sonograms showing a decline in Eli’s amniotic fluid level.
“By 33 weeks, the fluid decline was causing growth restriction for Eli. It was decided that I would receive steroid shots to aid lung function for the boys to be delivered—via C-Section—the day we reached 34 weeks. So, on April 25, 2015, we arrived at MedStar Harbor Hospital for the scheduled c-section. Our amazing medical team—led by Dr. Howard Popkin and Dr. Dennis Stern—delivered Christopher at 3:14 p.m., followed by Eli at 3:16 p.m.,” Christina explained.
Popkin later stated, “The pregnancy went to term with both children being born alive. The anencephalic child died shortly after birth but allowed the entire family to bond and grieve together.”
Christina shared that “God blessed her family by fulfilling their desire of both babies being born alive.”
Christopher, who weighed 3 lbs, 2 oz. at birth lived long enough to meet his siblings and extended family. Eli, who weighed 4 lbs, 6 oz. was taken to NICU for 14 days to receive accommodation to assist with temperature regulation and weight gain.
“ I took Christopher to meet Eli in the NICU to be photographed together, while my wife was getting stitched up,” Shawn recalled.
The Byrum family experienced a bittersweet mixture of joy and unimaginable loss during Christopher’s short life.
MedStar Harbor Hospital permitted the twins’ seven siblings, both sets of grandparents and several aunts and uncles to be present to celebrate the twins’ arrival and honor Christopher’s departure to Paradise.
Christopher’s ninety minutes of life outside of the womb were filled with memories being captured through picture-taking and “many family members showering him with plenty of love,” Christina said, reflecting on time spent with her precious newborn in a recovery suite.
When Christina was initially informed about Christopher’s anencephaly diagnosis, she located a Facebook support group called “Anencephaly Info.”
“Through this group, I discovered the resource PurposefulGift.com, which provides families with information on all aspects of neonatal organ donation across the country. Their information led us to further explore organ donation,” Christina said.
Unfortunately, Christopher did not meet weight requirements for organ donation, so his parents made a decision that led them down the path of research surgery instead.
A generous gift of education was provided amid tragic loss. Christopher’s legacy still impacts neonatal and infant patients because of one family’s brave decision.
In Part II, learn now Christina connected with Infinite Legacy—a nonprofit organ procurement organization which was previously Living Legacy— to support neonatal research.