"They were able to repair it. They did a fantastic job."
Tiana Waters likes to go to the park with her mom and baby brother. She loves riding her bicycle and scooter, and playing with her LOL dolls. She just started in-person kindergarten.
In every way but one, she’s a typical, happy 5-year-old. This past August, Tiana had 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 doesn’t close tightly, allowing some blood to flow backward. If untreated, it can eventually cause heart rhythm problems or even heart failure. “Letting her have the surgery at such a young age was a hard decision,” admits her mother, Beverly Mitchell. “But I had to think about my daughter’s future.”
A Concerning Condition
Tiana was born on July 10, 2016, six weeks early, weighing 4 pounds, 9 ounces. In spite of her early arrival, Tiana was healthy except for some jaundice. She spent a few days in the Level IV Neonatal Intensive Care Unit at NBI and went for checkups at the Pediatric Health Center at CHoNJ.
All was well until Tiana’s pediatrician heard a heart murmur during the little girl’s 2-year-old well child checkup. She was referred to Rowan Walsh, MD, Director of Pediatric Imaging at CHoNJ and a member of RWJBarnabas Health Medical Group.
“Tiana’s evaluation included an EKG and echocardiogram,” says Dr. Walsh. The echocardiogram showed mitral valve leakage, or regurgitation, resulting from a congenital (present at birth) abnormality of the mitral valve.
the mitral valve flaps don’t close
tightly and the valve leaks blood.
“The mitral valve regurgitation had caused 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 that the condition be monitored, and Tiana took medication to stop it from progressing. “With subsequent follow-ups, however, we saw that the condition was worsening,” he says. When Tiana was almost 4 years old, he broached the possibility of surgery.
“He said the surgery wasn’t a rush, because Tiana was not symptomatic,” Beverly recalls. “But he also said that if we waited too long, she could develop symptoms from heart failure.”
The options for surgery were discussed: repairing the valve versus replacing the valve. “Repair is optimal because if the valve needs to be replaced, Tiana would need to take anticoagulation medication for the rest of her life,” says Dr. Walsh.
The toughest decision was determining how long the operation could be safely postponed. “The fact that Tiana wasn’t having any symptoms just added to the dilemma,” explains Dr. Walsh. “You have a young patient who looks perfectly well, but the heart doesn’t look well. We think of the long game, the years ahead, the years of playing sports, adolescence. We wanted to set Tiana up for that. ”
A Family Decision
Beverly turned to her extended family for support. She held a family meeting at the hospital so everyone could hear what Dr. Walsh and renowned pediatric cardiothoracic surgeon Emile Bacha, MD, had to say. Dr. Bacha and John Karamichalis, MD, would be performing Tiana’s surgery as part of an innovative partnership with New York-Presbyterian Morgan Stanley Children’s Hospital.
Besides Beverly, Tiana’s dad, aunt, great-uncle and grandfather were there. The doctors presented the case for surgery and explained the options. “Any family who hears 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 this past July and scheduled her surgery on August 13. “I’ve never been so scared in my life,” she admits.
Once again, Beverly had her family with her. “Everyone who was at the meeting was in the hospital with me, plus more,” she says. “My twin sister was there, my daughter’s great-grandmother, my sister’s friend. Both her aunts from her dad’s side. Tiana definitely had a big support system.”
Tiana was in surgery 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 leaky valve.
The surgery was a success, and Tiana was able to return home after five days in the hospital. “They were able to repair it,” says Beverly with relief. “They did a fantastic job.”
“Tiana was a very, very good patient,” says Dr. Walsh. “I still find it amazing how pediatric patients pull through major open heart surgery and do so well. Tiana was one of those kids. That’s a reflection of her spirit, how happy a child she is and her supportive family.” Tiana will be checked periodically for the rest of her life to make sure the condition doesn’t recur, but the hope is that she will never need more surgery.
Just seven weeks after her operation, 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 down the center of her chest. “I told her, ‘That’s your warrior mark,’” says Beverly. “Those 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.