Story of mended heart calls attention to March of Dimes event

Sybil Cumberland entered the world at a healthy 7 pounds, 5 ounces, but unbeknown to her family and physicians, she arrived with a broken heart.

The first sign of trouble: Sybil didn't take her first breath until several minutes after birth. “They put her on a CPAP immediately,” remembers her mother, Tara Cumberland of Brandon.

Still, Sybil had a healthy weight, so she went home after two and a half weeks in a neonatal intensive care unit. Day by day, she grew weaker.

Fast-forward three years, past coming to Batson Children's Hospital and two surgeries there, and Sybil is now an active little girl who loves dancing, soccer and tee-ball. She'll get to take the field on a larger diamond April 30 at Trustmark Park when she's Ambassador of the local March of Dimes March for Babies, where event participants hope to raise $500,000.

“I've always said, anything I can do for Batson Children's Hospital and for the March of Dimes, I'll do. I want to give back,” said Tara Cumberland. “We were nominated to be the 2016 ambassadors for the March of Dimes March for Babies, and I thought, 'Wow, that may be how we're supposed to give back.'”

The March of Dimes March for Babies, the organization's largest fundraiser, starts with registration at 8 a.m., with the walk starting at 9 a.m. Teams for the walk can be found throughout UMMC, and donations and additional team members are welcome, said Dina Ray, March of Dimes executive director for market development.

UMMC has about 41 teams registered in the annual event, including the one Jennifer Stephen heads up, the Batson Administration Team.

“The March for Babies will bring tears to your eyes,” said Stephen, director of critical care and emergency services at Batson Children's Hospital. “The stories they tell, the recognition and the remembrances make it so special, and I am so proud of UMMC for our participation.”

What has Stephen out each year raising funds for the event is her love of our state and its people. “I do call myself Mississippi proud, but we have a long way to go when it comes to preventing prematurity and giving babies a healthier start.”

The March of Dimes “is very important to us,” said Guy Giesecke, CEO of Children's of Mississippi, the umbrella organization that includes Batson Children's Hospital and all pediatric care at UMMC. “They provide education and fund research and work to improve not only health care for babies but the health of babies.”

Having healthier babies is the goal of the group, which is known for its funding of research and advocacy to prevent premature birth and defects such as the ones that endangered Sybil's young life.

“At 2 and a half months, she went into distress while feeding,” Tara Cumberland said. That brought the family to Batson Children's Hospital, where they were told Sybil was suffering from congestive heart failure. Holes in her heart were stealing blood from the rest of her body and sending it to her lungs.

“Her heart was working seven times as hard as it should have been,” said Dr. Jorge Salazar, medical director of the Children's Heart Center at Batson Children's Hospital. “She was using all her energy on her heart and on getting blood to the rest of her body.”

Newborn pulse oximetry screening, something the March of Dimes advocated that's been required for all infants in the state since 2014, helps pick up on many congenital heart defects early, said Salazar. “We get about two to three babies a month (at the Children's Heart Center) who have congenital heart defects that were detected early with pulse oximetry testing.”

Finding heart defects as soon as possible means children have better treatment options and outcomes.

Children with congenital heart defects, Salazar said, are spending so much of their energy on breathing and on circulating blood through their bodies that they fail to thrive because there's little energy left for eating. “It's like these children are running a marathon 24 hours a day, seven days a week. They're so hungry, and when they stop to eat, they can't because they're panting. When they eat, they sweat because their bodies are working so hard.” 

Once Sybil's heart defects were discovered, she was too weak for the surgery to close the holes.

At 2 and a half months, a band was placed on Sybil's pulmonary artery to restrict blood flow to her lungs, said Salazar, “and that made her so much better.” From there, she regained her strength for a later more extensive surgery at about 6 months that closed the holes in her heart and removed the band on her pulmonary artery.

Nothing has slowed her down since, said Tara Cumberland. “These heart kids are amazing. Sybil has always been a fighter. She fought to be here with us.”

Said Sybil's cardiologist at UMMC, Dr. Aimee Parnell: “She's growing and thriving - she's a rock star! The last check-up she had, she was running around the examination room.”

The hearts of the rest of the Cumberland family - Tara, dad Jason and older brother Davis, now 7 - had a lot to do with Sybil's recovery, said Salazar. “Sybil's parents invested a lot in her. There is a lot to be said for the strength of parents' love for their children. The Cumberlands were surrounding Sybil with their love. I've not found anything more powerful than parents' love for their children.”

Congenital heart defects have been underrecognized, Salazar said, but that is changing.

“Infant mortality has gone way down in Mississippi, and a lot of that reduction is due to recognition of congenital heart defects early and the patient being referred to treatment,” Salazar said. “Early detection is the key. Then we can intervene early and save those babies.”

The March of Dimes' concern for congenital heart defects is warranted, as they are the most common form of birth defects. About one in 100 babies is born with a heart defect, said Dr. Jennifer Shores, who heads the fetal program at UMMC.

Congenital heart defects can be detected while a child is still in utero through the use of a fetal echocardiogram. “For the mom, it is like having an ultrasound.”

About 85-95 percent of congenital heart defects can be detected with fetal echocardiograms, Shores said. “It is amazing what you can see. You can be looking at a four-chamber heart view.”

The biggest hurdles are getting the word out that fetal screenings are available and boosting maternal health through prenatal care and counseling, said Parnell.

Prenatal care and treating health problems such as Type 2 diabetes, which can increase chances of children being born with birth defects by 5 percent or more, can make a difference, Parnell said.

“Healthier moms have healthier babies.”