How a Persistent Mom and a Second Opinion Saved a Child's Life

Dameyonna Willis knew something was wrong with her baby. The doctors at University Hospitals Rainbow Babies & Children’s Hospital had the answers – and saved her infant’s life.

In July 2017, Ms. Willis took her then 4-month-old daughter, Kylee, to a local hospital because she was having trouble breathing. Doctors told the west-side Cleveland mom that her baby had a viral infection and asthma, and that she would recover. But two weeks later, Kylee was still breathing heavy and fast.

“I thought, ‘Something is not right with my baby,’” Ms. Willis says. “She was not getting better.”

Looking for Answers

Ms. Willis decided to switch her daughter’s care to UH Rainbow Babies & Children’s Hospital. She called to ask for an appointment with a pediatrician and took Kylee to see Eliane Malek, MD.

Dr. Malek wanted to rule out any problems with Kylee’s heart, so she called the cardiology department, and within 15 minutes Kylee was being seen by Rainbow pediatric cardiologist Sarah Plummer, MD, who specializes in congenital heart disease, the most common type of birth defect in the United States. She ordered tests and quickly determined that Kylee had a rare and life-threatening congenital heart defect.

In a normal heart, the two coronary arteries originate from the aorta. In babies like Kylee, the left coronary artery arises from the pulmonary artery instead of the aorta. This condition, which affects about one in 300,000 babies, prevents the heart from receiving enough blood and oxygen. It can cause heart muscle damage, heart rhythm problems or even death. Kylee needed surgery right away and was admitted to The Congenital Heart Collaborative at UH Rainbow Babies & Children’s Hospital that day.

“Kylee’s vital signs were normal and she didn’t look that sick, but she had severe dysfunction of the left ventricle, the heart’s main pumping chamber,” Dr. Plummer says. “It was a priority to ensure that the baby underwent surgery in a reasonable period of time.”

Coordinated Care

Dr. Plummer says that because of the excellent relationship that pediatricians and subspecialists have at UH Rainbow Babies & Children’s Hospitals, Kylee was able to receive the highest level of care.

“If the primary care doctors think something is really urgent, they don’t hesitate to call us directly to see if we can expedite a consultation,” she says. “Kylee’s case was an extreme, extraordinary example, but I’d say we get these requests at least once a week. We’ll go out of our way to evaluate patients so we can put the family at ease.”

A Bright Future

In late August, pediatric cardiothoracic surgeon Eric Devaney, MD, FACS, performed a four-hour surgery to correct Kylee’s heart defect. Nine days later, Kylee went home. Her heart function is gradually improving, and the future seems full of possibility.

Kylee sees Dr. Plummer, Chief of Pediatric Cardiothoracic Surgery at UH Rainbow Babies & Children’s Hospital, every six weeks. She will continue to be regularly monitored by a cardiologist, who specializes in CHD, throughout her life.

“She’s doing perfect,” Ms. Willis says. “She wiggles around to music and likes clapping along to songs – she has a big personality. You’d never know she was sick. Her father, Kylan, and I are so blessed and happy that I chose to go to UH Rainbow Babies & Children’s Hospital for her care. They saved our daughter’s life.”

The Congenital Heart Collaborative

University Hospitals Rainbow Babies & Children’s and Nationwide Children’s hospitals have formed an innovative affiliation – The Congenital Heart Collaborative – for the care of patients with congenital heart disease from fetal life to adulthood.

The innovative collaboration provides families with access to one of the most extensive and experienced heart teams – highly skilled in the delivery of quality clinical services, novel therapies and a seamless continuum of care.

Related links

The Congenital Heart Collaborative