Two-year-old Serenity is a normal toddler with a not-so-normal story. She has a long scar in the middle of her chest (her “boo boo”) that represents the three open heart surgeries she had before her second birthday.
When Serenity’s mother Anita went into labor in December of 2014, she was expecting to welcome a healthy baby, her fourth daughter. But the baby’s heart rate began to drop, and Anita had to deliver via Cesarean section. Following an echocardiogram, Serenity was diagnosed with a congenital heart defect known as truncus arteriosus and airlifted to Children’s National, where cardiologist David Schidlow, M.D., M.Mus., and cardiac surgeon Pranava Sinha, M.D., teamed up to care for her.
Truncus arteriosus is a result of abnormal development of the outflow region of the heart during pregnancy. Instead of two valves and two blood vessels coming out of the heart, Serenity had one large, leaky valve and one blood vessel. Serenity also had a hole between the two lower chambers of her heart known as a ventricular septal defect (VSD). As a result, oxygen-poor blood that should go to the lungs was mixed with oxygen-rich blood that should go to the rest of the body.
When Serenity was four days old, Dr. Sinha performed surgery to close the hole in her heart and repair the leaky valve. He redirected the lung blood flow by placing a conduit (tube) that goes from the right ventricle to the lung.
The outflow valve in truncus arteriosus can be very abnormal, which proved to be the case for Serenity. While Serenity was recovering in the heart and kidney unit (HKU), her valve began to leak more and more. Because her heart was so fragile, she had recurrence of a small hole at the site of her previous repair. When she was 2 months old, Dr. Sinha performed a second surgery to repair the leaky valve and close the recurrent hole in the heart.
All in all, Serenity spent about four months in the HKU after she was born. “She’s one tough cookie,” Anita said.
The family moved to Georgia in summer 2016. Although Serenity had been doing well and was seeing a cardiologist there, she starting having more leaking of the valve, and the family moved back to Washington to continue Serenity’s care at Children’s National. “Because the doctors knew her so well in Washington, DC, and they were familiar with her condition, we knew she would receive the care she needed at Children’s,” Anita said. “We packed up and came back for Serenity’s health, and now she’s better than ever!”
On December 6, 2016, just before her second birthday, Serenity had a successful third surgery. Dr. Sinha had been able to repair Serenity’s abnormal valve twice, but because it had continued to leak, he replaced it.
“Truncus arteriosus with severe leak of the truncal valve is a major risk factor for poor outcomes. Even if repaired successfully at the initial surgery, the function of the valve gets worse over time and may require repeat surgeries for repair or even valve replacement, as in Serenity’s case,” said Dr. Sinha.
It wasn’t long before Serenity was back to being an active toddler. The surgery was on a Tuesday. On Thursday, Serenity’s 4-year-old sister came to visit, and Serenity was on a mat on the floor playing with her.
“Serenity owned the hallway in the HKU,” Anita recalled. “She was always pushing around her baby.”
“Serenity did beautifully with her aortic valve replacement and was as active and playful as ever the day after surgery,” Dr. Schidlow said. “She’s a super star.”
Serenity and her family formed a close bond with Dr. Schidlow, and they are glad to have him as Serenity’s doctor for the foreseeable future. “Dr. Schidlow has been our cardiologist all along and I wouldn’t have it any other way,” Anita said. “He’s amazing.”
Since her surgery, Serenity has been more active than ever. The two year old loves playing with her three older sisters, who call her “Toogie.” She has no lack of energy and rarely even naps!