‘Thank you from the bottom of my heart.’ Grateful mom thanks doctors, nurses with fundraiser for Pediatric Cardiac Intensive Care Unit

Bethany Smith never gave up on her dream of becoming a mom.

“I was told that I couldn't have kids because I had endometriosis and polycystic ovarian cysts,” Bethany said. After trying to get pregnant for five years, Bethany and her husband, Joshua, decided to move forward with their lives. “But we never gave up hope.”

For Bethany that meant pursuing a different dream: becoming a firefighter. She volunteered with Horry County Fire Rescue and started training through the South Carolina Fire Academy. She was “over the moon” to find she was pregnant just days after graduation.

Bethany’s ultrasounds were normal until halfway through her pregnancy, when an anatomy scan showed her daughter had an enlarged heart. Her doctor sent her to MUSC Florence to see a specialist who helps women with complicated or high-risk pregnancies. Barbara Head, M.D., gave Bethany an initial diagnosis: truncus arteriosus, a rare heart defect.

A baby with truncus arteriosus has a single blood vessel coming out of her heart instead of the usual two. This can cause severe problems with blood circulation, making it difficult to breathe and weakening the heart.

Bethany was referred to MUSC Children’s Hospital in Charleston, which has one of the top 10 children’s heart programs in the country, as ranked by U.S. News & World Report. Pediatric cardiologist Geoffrey A. Forbus, M.D., confirmed the diagnosis of truncus arteriosus, along with three other heart defects. Elaine had a hole in her heart, called a ventricular septal defect or VSD; she was missing part of her aortic artery; and her heart was leaking.

Because of her complex heart defects, Elaine would need highly specialized care as soon as she was born. Bethany was scheduled to be induced March 17 at MUSC.

Instead, Bethany was at home on her couch – more than two hours from Charleston – when she went into labor March 4. “At this point the contractions were about five minutes apart and they were pretty strong,” Bethany said. “And I rode in the back of an ambulance during a thunderstorm for two hours.”

 

Elaine Jordan Smith, 6 pounds, 7 ounces and 19 inches long, was born March 5, 2020 at 4:30 p.m. at the new MUSC Shawn Jenkins Children’s Hospital. The state-of-the-art hospital has an entire floor dedicated to the care of children with heart problems and a team of specialists and surgeons.

What pediatric cardiothoracic surgeon Scott Bradley, M.D., shared with them was hard to hear, Bethany said. “He let us know that there had only been five babies in the nation born with the exact same four heart defects that she has. And at the time she was born, only two of them had survived.”

 

Another harsh reality: the surgery Elaine needed only had a 20% survival rate.

Defying the odds, Elaine survived the complex surgery at just 6 days old. She spent the next three weeks recovering in the Pediatric Cardiac Intensive Care Unit (PCICU). “She's a little fighter,” Bethany said proudly.

After they got home, Bethany looked for a way to thank Elaine’s doctors and nurses for the joy she gets every morning hearing Elaine “growl like a little bear or make her little faces.” She decided to start a fundraiser, asking friends and family to celebrate her birthday in July 2020 with a donation to the PCICU. Bethany more than doubled her fundraising goal of $200, raising $430 to support the needs of the PCICU.

 

She’s already planning her next fundraiser for Elaine’s first birthday in March 2021. Bethany says Elaine, who is now 11 months old, is doing great and loves music and playing.

“If it were not for Dr. Bradley and Dr. Forbus, and the nurses, this would be a very different time for me,” Bethany said. “Truly, thank you from the bottom of my heart. There's no way to repay them for what they've given me. It's absolutely the best gift I could ever get.”