Richmond | Services: Children's Hospital Foundation Heart Center
The Heart of the Matter
“It was hard to accept that our seemingly-healthy baby had a heart defect and needed surgery a week after his birth,” Amy recalled of the days following her son’s April 2016 birth.
Born at VCU Medical Center a week after his due date, Sonny “was breathing fine but didn’t have a good cry,” said Amy, who attributed the weakness to the fact that Sonny aspirated meconium at birth, a condition that occurs when a newborn inhales a mixture of his first feces and amniotic fluid, blocking or partially blocking the baby’s airway. The condition occurs in less than 15 percent of births, is usually easy to treat and rarely leads to long-term problems.
Immediately after Sonny’s birth, doctors heard a heart murmur and transferred Sonny to the neonatal intensive care unit (NICU) at Children’s Hospital of Richmond at VCU (CHoR). By the time Amy saw him a couple of hours later, Sonny was hooked up to oxygen and other monitors. The following day, he had an echocardiogram, which detected an aortic coarctation or narrowing of the large blood vessel that delivers blood from the heart to the rest of the body. Because some coarctations resolve on their own, doctors continued to monitor Sonny. Two days after his birth, a second echocardiogram revealed the narrowing had become more severe, and the next day doctors recommended heart surgery with the Children’s Hospital Foundation (CHF) Heart Center team.
Heart Care in the Heart of Virginia
Established in 2014 with a 10-year, $28 million pledge from Children’s Hospital Foundation, the Children’s Hospital Foundation Heart Center is the only one of its kind in Central Virginia and offers services for children with congenital and acquired heart disease ranging from fetal cardiology and interventional cardiac catheterization to surgery and transplant.
For first-time parents, Amy and David, hearing their newborn son needed heart surgery was scary.
“We had hoped the doctors were wrong,” David recalled, “and that Sonny’s problem would fix itself.”
As the reality of Sonny’s situation set in, and after doing more research and meeting with Thomas Yeh Jr., MD, PhD, FACS, Director of the CHF Heart Center and Chief of Cardiac Surgery at CHoR, Amy said, “we realized we were in the best possible hospital.”
Amy remembered how Dr. Yeh spent time with them, drawing pictures of Sonny’s heart, describing the procedure and explaining the risks associated with not repairing the congenital heart defect including hypertension, kidney failure, aneurysm and gangrene.
“All babies are born with a tube that connects the aorta and pulmonary artery, or the blood vessel that supplies the lungs,” Dr. Yeh explained. “The tube normally closes on its own after birth, but with a coarctation, it is believed the tissue around the artery tries to close the aorta, which creates the narrowing and causes problems with blood flow to the rest of the body.”
Preparing for Surgery
After meeting with Dr. Yeh, Amy and David said they knew surgery was the best option for Sonny. They also knew they needed to spend some quality time with their son, who Amy said was so active in the NICU that he regularly set off the monitor’s alarms. They convinced Dr. Yeh to allow the new family to spend the weekend at home, only a few miles from CHoR.
“It was so nice to be home,” Amy recalled of their weekend respite. “We took a walk with Sonny and felt like nothing was wrong even though we knew the Monday morning surgery was looming.”
On Monday, April 18, Amy and David anxiously waited for updates during surgery from Dr. Yeh’s team, which came every one to two hours. Around 4 o’clock that afternoon, doctors informed the couple that because of the location of his narrowing, Sonny may require open heart surgery to repair his heart defect.
“That was devastating,” David remembered. “I felt he couldn’t handle another surgery.”
Fortunately for Sonny and his family, doctors were able to successfully complete the less-invasive surgical procedure, and Amy and David were able to stay with Sonny round-the-clock in CHoR’s pediatric intensive care unit (PICU) while he recovered.
The Road to Recovery
Sonny spent four days at CHoR following surgery. During that time, Amy and David said they were included in team rounds and encouraged to share ideas and questions with the medical team. Because of the tubes Sonny was connected to while he recovered, Amy and David were allowed to touch him but were not able to hold or move him. When Amy asked to hold Sonny two days after surgery, one of Sonny’s nurses made sure her request was met.
“The team included us anytime Sonny was being checked,” David said. “They wanted us to know what was going on with him.”
In the months following surgery, Sonny returned to the hospital for weekly then monthly checks with Dr. Yeh. When he was three months old, Sonny had a second procedure, a balloon angioplasty, to widen the narrowing blood vessel. Although it was an outpatient procedure, David said it was still scary because Sonny needed anesthesia.
A Very Happy Birthday
As Sonny prepared to celebrate his first birthday, Dr. Yeh said, “his long-term prognosis is excellent.” He continues to have some narrowing of the blood vessel near his left arm that may cause some weakness on that side. Sonny will return for quarterly follow-up appointments with Dr. Yeh, and although there is a chance he will need additional heart procedures as he grows, with regular physician follow up, Dr. Yeh said he does not expect Sonny to have any challenges reaching his developmental milestones.
While Sonny was slow to crawl, Amy said, “his main mission now is to walk.” He loves to stand and cruise around the furniture in his family’s home and is happiest watching people, beating pots and pans and playing with remote controls, phones and all things electronic. He has his first tooth, likes being outside and says Dada and Mama. But his newest accomplishment is Amy’s favorite – saying “I love you.”
A few months after Sonny’s surgery, Amy and David had friends whose baby was born with the same heart defect as Sonny. They happily shared their experiences at CHoR and their comfort with Dr. Yeh.
“We would have had to go out of town if the Heart Center [team] wasn’t here,” Amy said. “We were very lucky [Sonny was born] at VCU [Medical Center] and that one of the best heart doctors in the country was in Richmond.”