A hole inside a heart. A tiny heart. A heart the size of an infant’s fist, with a hole the size of a penny. A hole that helped to keep a little girl alive. Georgia Mae Braddy is, without doubt, a fighter. At four months old, she has already undergone three major surgeries, one of which took place while she was still in utero. This is her story, but it is also the story of a team of UNC doctors and comprehensive caregivers in the departments of cardiothoracic surgery, neurosurgery, and maternal-fetal medicine who worked tirelessly and diligently in coordinated effort to save her life.
At 20 weeks of pregnancy Carmen Braddy, a pediatric nurse, and her husband, Will Braddy were informed that their daughter had Myelomeningocele Spina Bifida, a birth defect in which the spinal cord does not develop properly. The condition involves issues with the spinal cord and nerves, meaning that her little girl may not be able to kick her legs or move her lower limbs, she may never be able to ride a bike or learn to roller skate. Eighty percent of children in this group will develop hydrocephalus, a build-up of cerebrospinal fluid in the cavities deep inside the brain. It was a terrifying diagnosis for the family, but there were options available to them.
Myelomeningocele, the lesion “opening” on the spine, can be repaired in two ways. The first is a surgery that takes place after the child is born, the back is open, nerves of the spine are exposed on the skin and then closed. The other option for babies diagnosed with Myelomeningocele Spina Bifida is a surgery done in utero. This allows the doctors to close up the spinal cord and nerves in the spine as the child is still developing and gives them a better chance of warding off the development of hydrocephalus as well as the possibility of maintaining some lower body function.
Carmen’s doctors at Duke referred the family to the UNC Medical Center, the only facility in the state of North Carolina and one of the few in the Southeastern United States that performs prenatal Myelomeningocele Spina Bifida surgery.
“When Duke first referred us to UNC for the surgery,” Carmen explains, “I told my husband, no way, I don’t want them messing with my child while she’s still inside of me. Maya Lindley, a coordinator with Maternal and Infant Health at UNC, contacted me to discuss the procedure and we had a conversation that lasted over an hour. After I hung up with her I just knew, I changed my mind, I was definitely going to do it just by learning the facts, the benefits and how this could potentially make her (my baby’s) quality of life better.”
On March 13, 2018, Carmen and her unborn child underwent surgery. Dr. William Goodnight, Associate Professor, and Maternal-Fetal Medicine doctor performed Carmen’s part of the surgery, creating an incision from her belly button to her pelvic bone. He positioned the baby and held her as Dr. Scott Elton, Division Chief of Pediatric Neurosurgery, completed the Myelomeningocele repair.
“We have a multidisciplinary team of doctors under one roof that come together to care for both the mother and her child,” says Dr. Elton. “Even before we ever get to surgery the parents meet everybody as a family, they see their team so everyone can explain what their part in the story is. This includes neurosurgery, maternal-fetal medicine, NICU, orthopedics, urology, and rehab. We want to make sure the parents are informed, empowered and feel supported throughout the entire process because they have become part of our family, we will see that child grow over the next eighteen years. ”
After the surgery, Carmen was on bed rest for the remainder of her pregnancy but made the trip every Tuesday for an ultrasound to check on her baby’s progress. On May 30, Carmen and her family checked in to UNC for their scheduled C-Section. Georgia Mae Braddy was born at 6 pounds, .5 ounces, 19 inches in length. “Everyone was so impressed when she came out kicking and moving her legs because we weren’t even sure she would be able to do that,” recalls William Braddy, Georgia Mae’s father.
After five days in the hospital, the Braddy family was discharged and headed home. Twenty days later, however, things took another turn. The family was going about their normal life, preparing dinner, and taking selfies with their 4 year old son, Emmett. Georgia Mae was nestled in her bouncer as the family scurried around the kitchen. Dad went to check on her, putting his hand on her chest, noticing something wasn’t right. He immediately called out to Carmen that she wasn’t breathing. Carmen rushed over and started actions to try and revive her, finally laying her down on the couch to lift up her neck to improve oxygen flow. As paramedics arrived, Georgia Mae had started to breathe again, but everyone knew something was wrong; she was rushed back to UNC Medical Center.
“The doctors started rolling in, and in no time I felt like I was in a movie scene. Her oxygen levels were dropping rapidly,” says Carmen. “They asked me to sit down in a chair, and a chaplain sat next to me. All these people ran in; they had the crash cart, the doctors were at the head of the bed intubating her. I was crying but a part of me, I guess the nurse side of me, noticed that everything was so coordinated. Everybody knew what they were supposed to do. I just remember it as controlled chaos.”
“A million things were running through my head,” Carmen recalled. “When she was in the ED before they intubated her, Dr. Daniel Park, I’ll never forget him, he put the ultrasound machine on her heart and said ‘her heart is enlarged,’ and we just didn’t know what that meant.”
Georgia Mae was transferred to the Pediatric Intensive Care Unit (PICU). After undergoing tests including an echocardiogram, she was diagnosed with TAPVR, Total Anomalous Pulmonary Venous Return. TAPVR is a rare congenital malformation in which all four pulmonary veins do not connect normally to the left atrium of the heart. Instead, the four pulmonary veins drain abnormally to the right atrium (right upper chamber in the heart) by way of an abnormal (anomalous) connection.
Dr. Mahesh Sharma, Chief of Congenital Cardiac Surgery and Co-director of the NC Children’s Heart Center explains her condition a little more simply. “That means the veins that carry oxygenated blood back from the lungs, to the left side of the heart so that blood can be pumped out through the aorta into the body, for the brain, kidneys, and other vital organs doesn’t make that connection. The blood was instead routed through the liver, to the right side of her heart and then inside the heart, because she had a hole, the blood was mixing. That blood mixture was what was keeping her alive. When she arrived at the hospital, the channel that was connecting the blood to the heart was starting to get narrowed and so that’s when she was having more symptoms.”