Barrett Earnest has a calm demeanor and contemplative eyes. In six short months of life, he has undergone 10 medical procedures to address a cleft lip and palate, a heart defect and lung problems. His family anticipates several more procedures to deal with other health issues before Barrett turns 5 years old.
“I promised myself I would never ask, ‘why us?’” says his mother Monica. “I decided that I would always look forward. The only way to make it through all of this is to stay positive. Cardinal Glennon helps us do that.”
Monica had what she describes as a very healthy pregnancy. At 20 weeks, however, an ultrasound revealed the cleft lip and palate as well as a condition called Tetrology of Fallot with pulmonary atresia, a complex congenital heart defect.
“We met with a cardiologist and he told us that Barrett wasn’t getting blood flow to his pulmonary artery,” says Monica. “He would have to undergo a procedure to restore that blood flow after he was born.” When Barrett finally arrived at SSM Health St. Mary’s Hospital in St. Louis, doctors did an immediate evaluation and discovered other medical problems in addition to the heart defect. They rushed Barrett to SSM Health Cardinal Glennon Children’s Hospital.
“We learned about the other problems within minutes of his birth,” says Monica. “He had an underdeveloped lung and a perforated bowel. But we had already met with Dr. Fiore, the cardiothoracic surgeon, and he was so reassuring both before and after Barrett was born that we felt at peace with everything the doctors and nurses were doing.”
Barrett was in the intensive care unit at SSM Health Cardinal Glennon for more than five months. He had a shunt placed in his heart to temporarily reroute blood flow, was placed on a ventilator and had to have a gastrointestinal tube for feeding. One night, at 11 o’clock, Monica and her husband received an emergency call from the hospital. “They had been trying to wean Barrett off the ventilator and his heart suddenly arrested; it stopped beating.”
Barrett experienced cardiac arrest two more times over the next two weeks. Instead of waiting until Barrett was six months or older to undergo a heart repair, doctors made the difficult decision to do open heart surgery on Barrett at two and a half months and when he weighed less than seven pounds.
“There were definitely times when I felt overwhelmed, especially as the medical problems continued to appear and the number of doctors kept growing, too,” says Monica. “But I had faith that God would give me what I could handle.” The Earnests also were enrolled in SSM Health Cardinal Glennon’s Complex Medical Care Program, which assists families whose children have five or more specialists involved in their care. Barrett currently sees 11 subspecialty pediatric specialists.
The program, which officially started two years ago, has grown to include more than 220 young patients and their families. “Previously, these children had multiple medical issues and great subspecialty care providers, but they didn’t have a key quarterback that was leading the charge in terms of collaborating with all physicians to develop a single, comprehensive care plan,” says SLUCare pediatric pulmonologist Kurt Sobush, MD, co-founder and co-director of the Complex Medical Care Program. “That’s why we started this program and it’s already been a great success.”
The program coordinates care in such a way that families can see several specialists and complete exams and blood work over a shorter period of time. “You almost always see a sigh of relief from these families and you can see their stress level go down because we handle all of the logistics involved in their child’s care,” explains Dr. Sobush.
The benefits of care coordination are quickly obvious. Dr. Sobush says that since the Complex Medical Care Program began in April 2016, the number of unplanned ER visits is down, attendance at subspecialty clinic visits is up, transitions from hospital to home resources are smoother, and both the patient and the physician’s satisfaction are high.
“We’ve had amazing doctors and nurses so far,” says Monica. “I actually lived at the hospital for about two and a half months after Barrett was born, and the hospital became a home away from home for us. Now that we’re back at our own home, it’s definitely reassuring that we still have the resources and help whenever we need it.”