“They were able to fix it. They did a fantastic job.”
Tiana Waters loves going to the park with her mom and little brother. She loves riding bikes and scooters and playing with her LOL dolls. She just started kindergarten in person.
In all but one way, she’s a typical, happy 5-year-old. Last August, Tiana underwent open-heart surgery at Children’s Hospital of New Jersey (CHoNJ) at Newark Beth Israel Medical Center (NBI). Tiana had mitral valve regurgitation, a condition where the valve does not close tightly, allowing blood to flow back. If left untreated, it can eventually cause heart rhythm problems or even heart failure. “Letting her have surgery at such a young age was a tough decision,” admits her mother, Beverly Mitchell. “But I had to think about my daughter’s future.”
A worrying condition
Tiana was born on July 10, 2016, six weeks early, weighing 4 pounds, 9 ounces. Despite her early arrival, Tiana was in good health except for jaundice. She spent a few days in the NBI’s Level IV Neonatal Intensive Care Unit and went for checkups at the CHoNJ Pediatric Health Center.
Everything was fine until Tiana’s pediatrician heard a heart murmur during the 2-year-old girl’s checkup. She was referred to Rowan Walsh, MD, Director of Pediatric Imaging at CHoNJ and member of RWJBarnabas Health Medical Group.
“Tiana’s evaluation included an electrocardiogram and an echocardiogram,” says Dr. Walsh. The echocardiogram showed mitral valve leakage, or regurgitation, resulting from a congenital (present at birth) defect of the mitral valve.
“The mitral valve regurgitation had caused an enlargement of the left side of Tiana’s heart, but Tiana was completely asymptomatic,” says Dr. Walsh. The little girl was growing well and thriving, so Dr. Walsh recommended the condition be monitored, and Tiana was put on medication to keep it from progressing. “With subsequent follow-ups, however, we saw that the condition was getting worse,” he says. When Tiana was almost 4 years old, he raised the possibility of surgery.
“He said the surgery wasn’t urgent because Tiana wasn’t symptomatic,” Beverly recalled. “But he also said that if we waited too long, she could develop symptoms of heart failure.”
The surgical options were discussed: repair the valve or replace the valve. “The repair is optimal because if the valve needs to be replaced, Tiana will have to take blood-thinning medication for the rest of her life,” says Dr. Walsh.
The most difficult decision was determining how long the operation could be safely postponed. “The fact that Tiana had no symptoms only made the dilemma worse,” says Dr. Walsh. “You have a young patient who looks perfectly fine, but the heart is not well. We think of the long game, of the years to come, of the years of sport, of adolescence. We wanted to prepare Tiana for this. ”
A family decision
Beverly turned to her extended family for support. She held a family gathering at the hospital so everyone could hear what Dr. Walsh and famed pediatric cardiothoracic surgeon Emile Bacha, MD, had to say. Dr. Bacha and John Karamichalis, MD, would perform Tiana’s surgery in an innovative partnership with New York-Presbyterian Morgan Stanley Children’s Hospital.
Besides Beverly, Tiana’s father, aunt, great-uncle, and grandfather were there. The doctors presented the case for the surgery and explained the options. “Any family that learns that a child needs open-heart surgery is devastated,” says Dr. Walsh. “It was a tough afternoon for them.”
Beverly decided to wait until after Tiana’s fifth birthday last July and scheduled her surgery for August 13. “I’ve never been so scared in my life,” she admits.
Again, Beverly had her family with her. “Everyone who was at the reunion was in the hospital with me, and more,” she says. “My twin sister was there, my daughter’s great-grandmother, my sister’s friend. His two aunts on his father’s side. Tiana definitely had a big support system.
Tiana was operated on for several hours, including an hour and a half on a cardiopulmonary bypass machine, which took over her body’s breathing and blood-pumping functions while surgeons repaired the leaking valve.
The operation was a success and Tiana was able to return home after five days in the hospital. “They were able to fix it,” Beverly said with relief. “They did a fantastic job.”
“Tiana was a very, very good patient,” says Dr. Walsh. “I always find it amazing how pediatric patients do so well in undergoing major open-heart surgery. Tiana was one of those children. It reflects her spirit, how happy she is and her supportive family. Tiana will be checked periodically for the rest of her life to make sure the condition does not recur, but the hope is that she will never need surgery again.
Just seven weeks after her surgery, Tiana was cleared to participate in all age-appropriate activities. She can now run and play with her classmates. In fact, these days the only sign that Tiana had heart surgery is the scar in the center of her chest. “I told him, ‘That’s your warrior mark,'” Beverly said. “These doctors saved your life.”
Whoever your heart beats for, our hearts beat for you. To learn more about pediatric cardiology at Children’s Hospital of New Jersey at Newark Beth Israel Medical Center, call 888-724-7123.