Georgia Heart Family Works Together to Raise CHD Awareness, Provide Hope

  • January 15, 2020

In 2016, Shelly and Brian were looking forward to starting their family. They were thrilled when they learned that Shelly was pregnant at the age of 39 with their first child. Although they knew there could be some risks to the pregnancy, they never expected to hear the words “Congenital Heart Disease.”

At Shelly’s 20-week ultrasound, they were shocked to discover that their baby would be born with Double Outlet Right Ventricle (DORV) a rare congenital heart defect, as well as Ventricular Septal Defect (VSD) and TGA, transposition of the great arteries. In DORV, the pulmonary artery and the aorta — the heart’s two major arteries — both connect to the right ventricle. Doctors called Sibley Heart Center Cardiology the same day to get Shelly on their schedule.

“Everything moved very quickly from the day of the ultrasound,” Shelly said. “I didn’t know anyone around me who had a child with CHD, and the doctors warned us that while we could research it on the internet, we’d see more negative outcomes than positive. It was scary, but our first meeting with Sibley really changed the trajectory of the pregnancy. They made us feel comfortable and reassured us that we had the best possible team for her arrival, which we did. I even received a weekly call from a social worker, encouraging me to embrace the pregnancy and keep that joy that we had been feeling all along. We were having a baby after all!”

When Brianna was born in the Spring of 2017, the team at Children’s Healthcare of Atlanta Heart Center was ready. Most babies with TGA are born with a small hole between their atria, which allows just enough red blood to get to the body to maintain life for a few hours. Typically diagnosed within the first hours after birth, TGA is life-threatening, and in order to survive, babies need a procedure called a balloon atrial septostomy, which Brianna received within 36 hours. However, that procedure is only temporary, and Shelly and Brian knew they still had to prepare for open heart surgery to repair the overall defects. Brianna had that surgery, which lasted for more than 10 hours, at six days old. The family would face a long road with Brianna’s health afterward but worked to maintain their positive outlook.

I always say her birth and being born with CHD was a way to truly take life’s lemons and make lemonade,” Shelly said. “She’s been the sweetest thing, the joy of our hearts, the sunshine of our days and truly heaven sent. She’s such a warrior. If anyone sees her in public now, they would have no idea of her journey.”

Because of the love, care and support her family received atCHOA, Shelly said she has been inspired to give back. She has been active in the CHD community since Brianna’s birth, including Georgia Heart Moms and the Children’s Heart Foundation. Last year, Team Brianna raised $13,000 for the Greater Atlanta CHD Walk. During Brianna’s heart anniversary week and twice during the year, they provide a Kids at Heart family dinner. While she was staying at Egleston during Brianna’s recovery, Shelly saw first-hand the continued support CHD families need as they care for a child born with a congenital heart defect. As a result, she launched the Heaven Sent Hearts Foundation, a non-profit organization committed to spreading the awareness of congenital heart defects (CHDs) and supporting families of children born with a CHD during their most difficult times.

“I had the idea for the foundation because we realized that most people are unaware that congenital heart defects are the most common birth defects in the United States. Before Brianna, we were not aware,” Shelly said. “I wanted to show that kids of all ethnicities, all walks of life, are impacted by CHD, and I also wanted to let people know there is light at the end of the tunnel. It gave me something positive and constructive to do while we were facing such a hard time, and I do feel forever indebted to the people at Sibley who helped us and supported us. I never knew that kind of caring and support existed in the healthcare community.”

Now, when Shelly sees Brianna running around her cardiologist’s office jabbering and acting like the quintessential thriving two-year-old, she marvels at how far her daughter has come. Brianna knows that CHOA is a safe and comforting place to be, and Shelly says, “it’s come to feel like a normal life even though it’s not.”

“Thanks to Brianna’s amazing spirit, her family’s outstanding care, and her team of medical providers including her pediatrician, GI, ENT, speech therapists, the Children’s Feeding Program and her cardiac team, she is thriving in every sense of the word today,” said Timothy Slesnick, MD, who is Brianna’s pediatric cardiologist. “Both she and her parents have had a long journey, but through it all, their optimism has never wavered, and Brianna’s successes are definitely a testament to all of their work. She now comes to clinic excited to see our staff, and her mother is very involved in our local CHD community. Indeed, the whole family is a great example of how it truly takes a village to achieve great things.”

For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.